Just a quick glance through the last load of moaning shows that I've missed out a fair bit in my journal of late. We managed to get elf into our first choice of school (yes she starts school in September, it goes quick) 2 days later we were handed a section 21.
For those of you unfamiliar with it, that's a notice to quit as the landlord requires the property back. I immediately contacted the housing team who said that if we wished to be re-housed by the council we had to basically squat past the move out date until they'd received a court order to remove us and then we could be placed in a hostel.
Joy. Because having that on my record will make getting a private landlord easy.
So, on top of trying to get my lesson prep, marking and general job stuff out of the way I was also trying to sort out where the hell we were going to live because moving back in with the in-laws was out of the question. THEN, the same week I was told that we had to leave our home I received a letter stating that all benefits had been stopped and I owed over £5000 in over payments since January last year.
The fact that all of this stress didn't kill me, that I have managed to sort it out AND move somewhere (not ideal and it's completely wiped out all of my savings) but I've had minimal CFS issues (well 14 crash days in the past 3 months isn't minimal but I'm still functioning which with that amount of stress is nothing short of a miracle) so fingers crossed I can take on some more hours come September (assuming they're available) and actually do more than subsist because working stupid hours and having every penny sucked into rent and food and bills is no way to live.
I don't drink, smoke or go out partying and even the lowest paid folks manage that at least once a month so I'd like to have a little to put aside to build up my savings again - I hate not having that padding because if after the 6 months tenancy agreement is up the new landlord wants the rent shortfall in advance again we're screwed. Not that I'm stressing about it or anything...
Thursday, July 25, 2013
Lost Aims
When I was in senior school the local library had a careers machine installed that allowed you to see what would be the best path to take based upon your interests; I found that commissioning editor for a publishing firm would be my ideal choice, I'd probably still love to do that kind of job; what saddens me is all the years I wasted getting by day to day without thinking I could actually do that kind of work - I assumed that all I could ever do was shop work or low paid unskilled work because that was all i'd ever experienced, no-one in my immediate network had achieved higher than deputy manager in a shop and at home I was always belittled when discussing possible ideas for the future. I had no support either mentally or financially and until the internet opened my eyes to a new way of looking at the world and a new way of communicating with people I stayed in that little bubble. Sadly I only embraced the internet when I had no other choice and for that I have to thank the ME/CFS because without it I'd not be earning the highest hourly wage I've ever experienced in my life. Yet even now I don't value myself enough to expect a high wage.
I have had many people in the past few years credit me with intelligence and an ability to get things done - a 'can-do attitude' as one person in particular labelled it, yet I still feel as though I'm a total failure, I've started too late to get things together and I think that will be my deepest regret; I wasted my useful years and now that illness has me limited physically I'll never reach the potential that even I can finally see is within me.
I wonder how many of my students are burdened with the same view of self..? Far too many I would wager, my only hope as a teacher is that I can help them see beyond the day to day and know the importance of not wasting the years that they have before them the way I did. The tough thing will be to do so without both over sharing and preaching. Wish me luck.
I have had many people in the past few years credit me with intelligence and an ability to get things done - a 'can-do attitude' as one person in particular labelled it, yet I still feel as though I'm a total failure, I've started too late to get things together and I think that will be my deepest regret; I wasted my useful years and now that illness has me limited physically I'll never reach the potential that even I can finally see is within me.
I wonder how many of my students are burdened with the same view of self..? Far too many I would wager, my only hope as a teacher is that I can help them see beyond the day to day and know the importance of not wasting the years that they have before them the way I did. The tough thing will be to do so without both over sharing and preaching. Wish me luck.
Tuesday, May 28, 2013
Mightily pissed off.
The fucktard at the job centre plus telephone contact centre who told me I needed to claim JSA online after I explained about my 2 month cessation of paid employment obviously did not listen to my explanation properly because it turns out she should have instead given me the number for ESA.
Yes, I spent a whole 2 days last week filling out the online form (that should only take an hour they say; and if the site stopped timing out maybe it would have been that swift to do...) I then received a text with my job centre appointment; 10:05 this morning.
After checking the buses I realised I could either get there 30 minutes early or 10 minutes late so I opted for early, being the organised sort and all. When I got there I was informed that there was no waiting areabut I could stand in the lobby. As it was cold and raining and my being in the lobby kept forcing the doors to open I went back into the job centre intending to stand out of the way just behind the doors by the window - immediately the G4S lass came and kicked me back out again. By this time I was feeling knackered and my leg was really hurting so you can imagine my joy when I went back in at 10:00 to be told that no - the appointment is for 10:15, they just tell us to be there 10 minutes early.
So, I could have taken the later bus and been bang on time, not tired and sore or in anybody's way yet they neglected to state this time I was sent was 10 minutes prior to the actual appointment thereby taking that option away from me.
To add insult to injury I then sat down with the lass at the desk and gave her all of my information which she photocopied, ticked off and signed my form and then sat in stunned disbelief as she told me I needed to be available and looking for full time employment. I explained my situation and she said oh - i'm afraid you don't meet the criteria for JSA, you need to make a claim for ESA instead.
The main reason I called the contact centre in the first place was to establish which benefits I was eligible for and needed to claim so I have wasted a week of my time, bus fare and a phone call only to now have to start the process all over again. FML
What's the betting they say I don't get esa either because i'm fit for work..?
Yes, I spent a whole 2 days last week filling out the online form (that should only take an hour they say; and if the site stopped timing out maybe it would have been that swift to do...) I then received a text with my job centre appointment; 10:05 this morning.
After checking the buses I realised I could either get there 30 minutes early or 10 minutes late so I opted for early, being the organised sort and all. When I got there I was informed that there was no waiting areabut I could stand in the lobby. As it was cold and raining and my being in the lobby kept forcing the doors to open I went back into the job centre intending to stand out of the way just behind the doors by the window - immediately the G4S lass came and kicked me back out again. By this time I was feeling knackered and my leg was really hurting so you can imagine my joy when I went back in at 10:00 to be told that no - the appointment is for 10:15, they just tell us to be there 10 minutes early.
So, I could have taken the later bus and been bang on time, not tired and sore or in anybody's way yet they neglected to state this time I was sent was 10 minutes prior to the actual appointment thereby taking that option away from me.
To add insult to injury I then sat down with the lass at the desk and gave her all of my information which she photocopied, ticked off and signed my form and then sat in stunned disbelief as she told me I needed to be available and looking for full time employment. I explained my situation and she said oh - i'm afraid you don't meet the criteria for JSA, you need to make a claim for ESA instead.
The main reason I called the contact centre in the first place was to establish which benefits I was eligible for and needed to claim so I have wasted a week of my time, bus fare and a phone call only to now have to start the process all over again. FML
What's the betting they say I don't get esa either because i'm fit for work..?
Wednesday, April 03, 2013
Our stupid government
I'm more than dismayed by the fact that once again our government are kowtowing to the idiotic generalizations of the fear mongering media and financially attacking those of our society least placed to defend themselves.
But hey - what's new there?
Obviously I'm feeling like one of the attacked - especially seeing as I've worked bloody hard to get off health benefits and into paid employment - sadly we are now financially far worse off than before and every week I still have to carefully balance my activities or risk relapsing back to the point where I can't physically do the job I've worked so bloody hard to get.
So why are we worse off do you say? At the risk of being shouted at for airing my dirty laundry in public I'll tell you.
I currently earn around £100pm more than I got on benefits but it still isn't enough to claim working tax credits - it is however enough for the powers that be to say my other half can't get any JSA, this has the knock on affect of cutting down our entitlement to housing benefit and council tax benefit - sadly a necessary boost to our income to allow us to pay rent, send elf to nursery and eat each month as well as pay for me to travel to work; if I lived back up north where rents are much lower it wouldn't matter but when rent takes up over 2/3 of my income it is a problem living here, this effectively means as a family we are now living on around £150pm LESS than we were when I was claiming ESA. Stupid huh? and it will likely get worse for us before then end of this year as my other half is trying to get his business off the ground just as I'm about to hit the academic lull and have no work for 2 months and need to claim JSA myself; it be a vicious circle people..
If I could physically handle more hours it would not be an issue but having tried more hours and having no choice but to adjust the levels of work downwards since I started in September we know that I can just about handle at most 13 classroom hours a week without it kicking off an ME/CFS attack.
So imagine my joy upon reading the Guardian to find that they will be calling people in for interviews and expecting the low paid to take on more hours or change jobs in order to stop claiming the kind of 'top up' benefits we couldn't survive without. I know that is an over simplification of what is being proposed but as usual they make these sweeping statements of what is necessary without seemingly taking into account the realities of life: where are these new jobs and extra hours coming from in a climate of recession? what if like me you are physically only able to work a certain amount of hours anyway? what if you do earn a reasonable wage but live in an area that makes it seem less reasonable because of high rent and taxes and distance needed to travel to work?
The cost of living has risen to ridiculous levels and the average wage just doesn't cover enough of that; if the government REALLY want to stop the cost of benefits to the treasury then they need to address the cost of living.
Set a basic rental level for each type of property (taking into account owner mortgage payments of course; perhaps mortgage payment +3-5% to allow for repairs etc) limit the cost of house prices by type for all new builds and perhaps start a national food store chain that allows us to buy locally sourced basics at an affordable regulated price; if it is an internet based model then we could even get vouchers delivered by email and shop online; allowing anyone to work on these for no pay but instead gain access to participating gyms equivalent to the hours worked or having the ability to get cinema/ theater tickets or other incentives
The upshot? No price changes means allowing families to budget properly instead of having to wait for sales and offers or bulk buys, just ensure each family gets vouchers that cover the weekly basics of a healthy diet, they can be spent individually or saved up and spent on a bulk buy according to the family needs - anything above the basic staples they can get from the normal supermarkets if they have the funds for it after paying for transport and utilities.
Obviously losing the stress caused by trying to just make ends meet will cut the number of people needing medical help and if those same people eat healthily then there is even less chance of them adding strain to the medical system thereby cutting NHS costs exponentially.
Once people have the basics covered then they are happier and hope is restored, that hope allows them to get on with life; people with hope are less inclined to turn to crime and happy people are less likely to turn to anti-social behaviour which means the strain on our police force would likely be reduced.
Sadly this will never happen because the government only care about the rich because that is the way the world works, the rich come to power and those in power look at the ways they can make life better for themselves and their immediate circle; yes we all want the power to do that but 98.5% of us will never have the chance and the hope of a better life is getting increasingly smaller with every year that passes.
I hate that the housing benefit I do get pays for someone else to own a home that they don't even live in and yet I can't even consider buying my own home because even though a mortgage payment would be less than my rent I can't afford to pay it without help - our entire system is designed to help the rich and it will never change.
But hey - what's new there?
Obviously I'm feeling like one of the attacked - especially seeing as I've worked bloody hard to get off health benefits and into paid employment - sadly we are now financially far worse off than before and every week I still have to carefully balance my activities or risk relapsing back to the point where I can't physically do the job I've worked so bloody hard to get.
So why are we worse off do you say? At the risk of being shouted at for airing my dirty laundry in public I'll tell you.
I currently earn around £100pm more than I got on benefits but it still isn't enough to claim working tax credits - it is however enough for the powers that be to say my other half can't get any JSA, this has the knock on affect of cutting down our entitlement to housing benefit and council tax benefit - sadly a necessary boost to our income to allow us to pay rent, send elf to nursery and eat each month as well as pay for me to travel to work; if I lived back up north where rents are much lower it wouldn't matter but when rent takes up over 2/3 of my income it is a problem living here, this effectively means as a family we are now living on around £150pm LESS than we were when I was claiming ESA. Stupid huh? and it will likely get worse for us before then end of this year as my other half is trying to get his business off the ground just as I'm about to hit the academic lull and have no work for 2 months and need to claim JSA myself; it be a vicious circle people..
If I could physically handle more hours it would not be an issue but having tried more hours and having no choice but to adjust the levels of work downwards since I started in September we know that I can just about handle at most 13 classroom hours a week without it kicking off an ME/CFS attack.
So imagine my joy upon reading the Guardian to find that they will be calling people in for interviews and expecting the low paid to take on more hours or change jobs in order to stop claiming the kind of 'top up' benefits we couldn't survive without. I know that is an over simplification of what is being proposed but as usual they make these sweeping statements of what is necessary without seemingly taking into account the realities of life: where are these new jobs and extra hours coming from in a climate of recession? what if like me you are physically only able to work a certain amount of hours anyway? what if you do earn a reasonable wage but live in an area that makes it seem less reasonable because of high rent and taxes and distance needed to travel to work?
The cost of living has risen to ridiculous levels and the average wage just doesn't cover enough of that; if the government REALLY want to stop the cost of benefits to the treasury then they need to address the cost of living.
Set a basic rental level for each type of property (taking into account owner mortgage payments of course; perhaps mortgage payment +3-5% to allow for repairs etc) limit the cost of house prices by type for all new builds and perhaps start a national food store chain that allows us to buy locally sourced basics at an affordable regulated price; if it is an internet based model then we could even get vouchers delivered by email and shop online; allowing anyone to work on these for no pay but instead gain access to participating gyms equivalent to the hours worked or having the ability to get cinema/ theater tickets or other incentives
The upshot? No price changes means allowing families to budget properly instead of having to wait for sales and offers or bulk buys, just ensure each family gets vouchers that cover the weekly basics of a healthy diet, they can be spent individually or saved up and spent on a bulk buy according to the family needs - anything above the basic staples they can get from the normal supermarkets if they have the funds for it after paying for transport and utilities.
Obviously losing the stress caused by trying to just make ends meet will cut the number of people needing medical help and if those same people eat healthily then there is even less chance of them adding strain to the medical system thereby cutting NHS costs exponentially.
Once people have the basics covered then they are happier and hope is restored, that hope allows them to get on with life; people with hope are less inclined to turn to crime and happy people are less likely to turn to anti-social behaviour which means the strain on our police force would likely be reduced.
Sadly this will never happen because the government only care about the rich because that is the way the world works, the rich come to power and those in power look at the ways they can make life better for themselves and their immediate circle; yes we all want the power to do that but 98.5% of us will never have the chance and the hope of a better life is getting increasingly smaller with every year that passes.
I hate that the housing benefit I do get pays for someone else to own a home that they don't even live in and yet I can't even consider buying my own home because even though a mortgage payment would be less than my rent I can't afford to pay it without help - our entire system is designed to help the rich and it will never change.
Monday, February 11, 2013
2013 is MY year
Yes, tempting fate is never clever but you know what? I really am feeling it. This year is going to be my best yet; I'm working, I have focus and the ME/CFS is finally proving to be manageable; even with the ridiculous workload I'm under.
The crash count downward trend continues and I'm almost at my goal of less than 5 a month! This keeps up then I'll be able to start taking on more hours and hopefully, in a couple of years or so i'll be able to work full time again!
The crash count downward trend continues and I'm almost at my goal of less than 5 a month! This keeps up then I'll be able to start taking on more hours and hopefully, in a couple of years or so i'll be able to work full time again!
| 2010 | 2011 | 2012 | |
|---|---|---|---|
| Amount of crashes in January | 8 | 8 | unknown |
| Amount of crashes in February | 9 | 9 | unknown |
| Amount of crashes in March | 13 | 7 | 9 |
| Amount of crashes in April | 10 | 5 | 10 |
| Amount of crashes in May | 11 | 14 | 6 |
| Amount of crashes in June | 15 | 10 | 4 |
| Amount of crashes in July | 8 | 9 | 10 |
| Amount of crashes in August | 16 | 7 | 4 |
| Amount of crashes in September | 10 | 9 | 3 |
| Amount of crashes in October | 14 | 15 | 5 |
| Amount of crashes in November | 8 | 18 | 2 |
| Average crash per month: | 11 | 10 | 6 |
I haven't included December 2012 as it would throw off the stats having missed the data for the last 2 years (somehow) and to be fair having 9 in a month hurts the downward trend but when you take into account that I also had the winter sickness bug ONLY having 9 crashes is a result - look at November 2011 when I had the same sickness; double the crashes.
I know I'm using my brain more and I'm doing a LOT of mental work without much pacing but the fatigue crashes are definitely getting less (by which I mean the total physical shutdowns are getting fewer and further apart) however the aphasia seems to be getting worse.
I'm coping with it but it is really frustrating in class to be trying to describe or explain something and have no words available with which to do so - it's no wonder the student feedback from one of my classes was that I can't explain things for shit. (not in those words but...)
9am is not the best time for my brain to function; my 7pm class for the same module seem to have no issue with me so yep, I need to work on my consistency which probably means resorting to video delivery for some lessons. I'm working on it, it's just one of those little issues that ME/CFS throw at you to work around and I'm experienced enough at that now that given time I'll find a solution to it.
So yeah, feeling pretty good on the ME/CFS front. I figure next year should be even better as there will be less stress on the work front because not only will I know what I'm doing in the bureaucratic box ticking front, I will also be more confident with the course content and my delivery of it; everyone keeps telling me the first year teaching is the worst, that it's a steep learning curve and everything seems so much harder but if that's the case then next year will definitely be a breeze - I'm already concocting ways of making it easier on myself and more interesting for the students so... Woot!
Tuesday, October 23, 2012
Back in the saddle..
Still tired today, the problem module had me on my knees last night as I received the lecture slides for this mornings lesson. I had to teach myself standard deviation, correlation coefficients and interquartile range; Until last night I didn't even know what a distribution curve was.
Yes I'd heard these terms before but as I've never had any call to deal in statistics they meant less than nothing to me. Mathematics was the bane of my life at school - 20 + years ago I just about scraped a D at GCSE and I never touched it again so you can probably imagine how I felt after 5 solid hours of self teaching through the power of the internet.
This means it's probably no surprise that this morning I tore my class a new one when they failed to show me the slightest courtesy as I tried to share this hard won knowledge with them for the sake of their assignment. Yes, I snapped and you know what - I'm not sorry.
It's hard to believe that these are degree level kids; that they are over 18 and legally classed as adults. There were only 4 adults in that class today and I was one of 'em. Kind of scary to realise that these are the managers of the future. *sigh* no wonder our economy is gasping for breath and society is tumbling into hell.
On the plus side, after this class (and a HR meeting) there was a module team meeting which ironed out (hopefully) all of the module issues we've been having - fingers crossed it's now plain sailing here on in...
THEN I had a mentor meeting and my day went south again. Seems I need to learn to create a ton of documentation for each class - I have to create a ridiculously detailed scheme of work that covers every nuance of every single module I teach and a lesson plan that not only covers the activities in each individual class but is a full A4 document (landscape orientation) detailing the learning outcomes of each activity, the class differentiation and numerous other things that quite frankly I was too tired to really take in.
So today I was in work for 7 hours but I only get paid for 3h15m of that - and they say teachers are overpaid and underworked! My time sheet for this month shows 57hrs - I've easily done double - possibly triple that with all the meetings and lesson planning that I can't claim for and I'm supposed to be a part timer! I really have no clue how the full time teachers cope with the workload - it's inhuman!
..so yeah, no shock I crashed on Friday; thank god next week is half term; I can finally catch up on my admin. (because yeah, having an actual break would be too much to ask for when I'm not getting paid to work eh?!)
Look at me whining *grin* nearly 2 months in and you'd never think I'd been unemployed lol I'm officially a worker now, got a gripe on and everything ;0)
Yes I'd heard these terms before but as I've never had any call to deal in statistics they meant less than nothing to me. Mathematics was the bane of my life at school - 20 + years ago I just about scraped a D at GCSE and I never touched it again so you can probably imagine how I felt after 5 solid hours of self teaching through the power of the internet.
This means it's probably no surprise that this morning I tore my class a new one when they failed to show me the slightest courtesy as I tried to share this hard won knowledge with them for the sake of their assignment. Yes, I snapped and you know what - I'm not sorry.
It's hard to believe that these are degree level kids; that they are over 18 and legally classed as adults. There were only 4 adults in that class today and I was one of 'em. Kind of scary to realise that these are the managers of the future. *sigh* no wonder our economy is gasping for breath and society is tumbling into hell.
On the plus side, after this class (and a HR meeting) there was a module team meeting which ironed out (hopefully) all of the module issues we've been having - fingers crossed it's now plain sailing here on in...
THEN I had a mentor meeting and my day went south again. Seems I need to learn to create a ton of documentation for each class - I have to create a ridiculously detailed scheme of work that covers every nuance of every single module I teach and a lesson plan that not only covers the activities in each individual class but is a full A4 document (landscape orientation) detailing the learning outcomes of each activity, the class differentiation and numerous other things that quite frankly I was too tired to really take in.
So today I was in work for 7 hours but I only get paid for 3h15m of that - and they say teachers are overpaid and underworked! My time sheet for this month shows 57hrs - I've easily done double - possibly triple that with all the meetings and lesson planning that I can't claim for and I'm supposed to be a part timer! I really have no clue how the full time teachers cope with the workload - it's inhuman!
..so yeah, no shock I crashed on Friday; thank god next week is half term; I can finally catch up on my admin. (because yeah, having an actual break would be too much to ask for when I'm not getting paid to work eh?!)
Look at me whining *grin* nearly 2 months in and you'd never think I'd been unemployed lol I'm officially a worker now, got a gripe on and everything ;0)
Sunday, October 21, 2012
crash average update
| 2010 | 2011 | 2012 | |
|---|---|---|---|
| Amount of crashes in January | 8 | 8 | unknown |
| Amount of crashes in February | 9 | 9 | unknown |
| Amount of crashes in March | 13 | 7 | 9 |
| Amount of crashes in April | 10 | 5 | 10 |
| Amount of crashes in May | 11 | 14 | 6 |
| Amount of crashes in June | 15 | 10 | 4 |
| Amount of crashes in July | 8 | 9 | 10 |
| Amount of crashes in August | 16 | 7 | 4 |
| Amount of crashes in September | 10 | 9 | 3 |
| Amount of crashes in October | 14 | 15 | tbc |
| Amount of crashes in November | 8 | 18 | tbc |
| Average crash per month: | 11 | 10 | tbc |
So far this month only 5 days wasted in bed with this; although one of those was a work day which sucks, but on the whole less than 10 a month is a result as far as I'm concerned. So far this year only 6.5 days a month lost to ME/CFS.. Ok, so it may have been more if I'd had the data from January and February to also calculate the average of, but even so - it's continuing the downward trend and having a pattern to my days and a goal to focus on really helps with the pacing.
..at least that's what I'm telling myself...
Saturday, October 20, 2012
Fed up.
I had to miss my first class due to the ME/CFS on Friday. I guess I knew it was coming, the Menieres has been slowly getting worse and I've had to up my meds for that to 6 a day instead of 3 in an effort to combat the nausea and dizzies and I'm finding a few things a tad difficult on the brain fog front by the end of the week because one illness always kick starts the other - they're nice like that...
The last couple of weeks I get to Friday afternoon and the work based learning class and my brain is practically mush; I'm so tired that I get through it (just about) and I'm on the bus home and in bed already praying for the following weekend. I definitely work better in a 1-2-1 situation than in front of a group when I'm like that; less stimuli to process makes it much easier to function.
It wouldn't be so bad but one of my modules is turning out to be rather stressful - every time it seems the issues are ironed out someone throws some kindling back on the fire and we're just fighting a rearguard action and never getting ahead - that on top of the ongoing 'landlord selling our flat' saga is doing my head in.
I've been sat in a puddle of misery and dread since Friday morning when I realised I couldn't move or speak and I was supposed to be taking Bella to nursery and getting the bus to work. I finally managed to move but it was a full on crash - just rolling over in bed took 10 minutes to recover from and it was a good 30 minutes from finally being able to sit up that I eventually managed to communicate in more than grunts.
I immediately called work to tell them I wouldn't be able to make it in before the ability to communicate left me again and (of course) ended up balling my eyes out in misery and frustration when Donna was nice to me because I couldn't even get the words out necessary to explain properly - this bloody aphasia sucks great fat donkey bollocks! I'm just lucky that I've had a conversation with her about how the crappy illness affects me and she could read between the lines (and my hateful sobbing) to finish my sentences for me. I must have sounded like a complete moron stuttering and grasping at words between sniffles.
I honestly think I'd still have been OK again this week if it hadn't been for the assignment feck up with the 1st years module. Instead of having Wednesday off I was panicking about a class on Thursday that should already have been sorted; going over and over my options regarding the lesson plan and trying to ensure I'd covered everything - then to top it off I had an email from 2 people about 2 websites I'm supposed to be helping with which just added to the stress head I was building over falling behind.
I really don't want to lose another module this semester, if I can just make it through until semester B I'll ensure I only accept at the most 2 modules and as I won't have the website stuff to worry about then things (should) be peachy. I knew it would be a slow process figuring out my limits but I didn't realise just how shitty doing so would make me feel.
I'm back to feeling useless again. I know how overworked all the staff are in there, I know that my issues are likely to be adding stress to at least 2 other people and I hate being that person, I hate causing problems - I'm supposed to be the person who fixes things and makes it all better not the one adding roadblocks!
Meh, self pity will get me nowhere. Time to suck it up and crack on.
I'll get the LUF site out of the way tomorrow and do my Tuesday lesson plan. Stef will just have to do everything for the kids Halloween party on Monday while I recuperate and think of some way to make it up to him and then if I can just get through next week I'll be able to get the vegepa site up and running for Lynne next weekend THEN I can just concentrate on the marking I'll have coming in without the stress of those 2 unfinished jobs at the back of my mind.
The housing situation... well, there's nothing I can do to alleviate the worry of possible homelessness is there? Our situation will not magically change and I have to just live with complete strangers tramping through our home and the uncertainty of whether we will be given a months notice or a rent increase with each visitation.
Sucks to be me right now. I just hope the work stuff levels off so I can concentrate on actually teaching, right now I feel a bit of a fraud as I'm barely catching breath between classes to refresh my knowledge on the things I'm supposed to be teaching before the next email of doom comes through ripping apart all my carefully laid plans...
Next year will be better - everyone says the 1st year of teaching is the worst so if I can weather this with all my health crap I'll be bloody awesome next year when I know what I'm doing and exactly what's expected from me. Especially if I can use the summer to create some E-learning resources to help bolster the days I feel like this...
The last couple of weeks I get to Friday afternoon and the work based learning class and my brain is practically mush; I'm so tired that I get through it (just about) and I'm on the bus home and in bed already praying for the following weekend. I definitely work better in a 1-2-1 situation than in front of a group when I'm like that; less stimuli to process makes it much easier to function.
It wouldn't be so bad but one of my modules is turning out to be rather stressful - every time it seems the issues are ironed out someone throws some kindling back on the fire and we're just fighting a rearguard action and never getting ahead - that on top of the ongoing 'landlord selling our flat' saga is doing my head in.
I've been sat in a puddle of misery and dread since Friday morning when I realised I couldn't move or speak and I was supposed to be taking Bella to nursery and getting the bus to work. I finally managed to move but it was a full on crash - just rolling over in bed took 10 minutes to recover from and it was a good 30 minutes from finally being able to sit up that I eventually managed to communicate in more than grunts.
I immediately called work to tell them I wouldn't be able to make it in before the ability to communicate left me again and (of course) ended up balling my eyes out in misery and frustration when Donna was nice to me because I couldn't even get the words out necessary to explain properly - this bloody aphasia sucks great fat donkey bollocks! I'm just lucky that I've had a conversation with her about how the crappy illness affects me and she could read between the lines (and my hateful sobbing) to finish my sentences for me. I must have sounded like a complete moron stuttering and grasping at words between sniffles.
I honestly think I'd still have been OK again this week if it hadn't been for the assignment feck up with the 1st years module. Instead of having Wednesday off I was panicking about a class on Thursday that should already have been sorted; going over and over my options regarding the lesson plan and trying to ensure I'd covered everything - then to top it off I had an email from 2 people about 2 websites I'm supposed to be helping with which just added to the stress head I was building over falling behind.
I really don't want to lose another module this semester, if I can just make it through until semester B I'll ensure I only accept at the most 2 modules and as I won't have the website stuff to worry about then things (should) be peachy. I knew it would be a slow process figuring out my limits but I didn't realise just how shitty doing so would make me feel.
I'm back to feeling useless again. I know how overworked all the staff are in there, I know that my issues are likely to be adding stress to at least 2 other people and I hate being that person, I hate causing problems - I'm supposed to be the person who fixes things and makes it all better not the one adding roadblocks!
Meh, self pity will get me nowhere. Time to suck it up and crack on.
I'll get the LUF site out of the way tomorrow and do my Tuesday lesson plan. Stef will just have to do everything for the kids Halloween party on Monday while I recuperate and think of some way to make it up to him and then if I can just get through next week I'll be able to get the vegepa site up and running for Lynne next weekend THEN I can just concentrate on the marking I'll have coming in without the stress of those 2 unfinished jobs at the back of my mind.
The housing situation... well, there's nothing I can do to alleviate the worry of possible homelessness is there? Our situation will not magically change and I have to just live with complete strangers tramping through our home and the uncertainty of whether we will be given a months notice or a rent increase with each visitation.
Sucks to be me right now. I just hope the work stuff levels off so I can concentrate on actually teaching, right now I feel a bit of a fraud as I'm barely catching breath between classes to refresh my knowledge on the things I'm supposed to be teaching before the next email of doom comes through ripping apart all my carefully laid plans...
Next year will be better - everyone says the 1st year of teaching is the worst so if I can weather this with all my health crap I'll be bloody awesome next year when I know what I'm doing and exactly what's expected from me. Especially if I can use the summer to create some E-learning resources to help bolster the days I feel like this...
Sunday, October 07, 2012
Still feeling positive...
I'm actually looking forward to this week; possibly helps that I'm starting off with something fun as I have a beading group meeting on Monday - missed the last 2 so REALLY looking forward to this one.
My slides and documents are already prepared for Tuesday and Thursdays business applications class (was up until 3am last night doing that) I'm being 'unofficially' observed Tuesday morning so hoping it goes well, but just knowing that I now have the Wednesday to prepare for the Thursday/ Friday lessons has taken off the stress and panic of last minute prep; not to mention saved me money and cut out some lengthy bus travel; I can now relax into my job and find a rhythm so that I can PACE!
It's all good!
I'll even have the time (and energy) to play with my wee lass when she asks now because I'm not playing catch-up with my work (at least I hope that's what will happen) it's amazing how just one day can have such an effect! Losing the FE module has seriously improved my chances of avoiding the usual November dip (ok, mini-relapse) I'll admit, the worry is still there and I'm trying to be more optimistic; it helps that I've got a sense of control this year - just in time too!
I really think I have a shot at making this a career instead of just a job, things are looking up people! From here the future has a slight rosey tinge around the edges now and I intend to cultivate that colouring!
My slides and documents are already prepared for Tuesday and Thursdays business applications class (was up until 3am last night doing that) I'm being 'unofficially' observed Tuesday morning so hoping it goes well, but just knowing that I now have the Wednesday to prepare for the Thursday/ Friday lessons has taken off the stress and panic of last minute prep; not to mention saved me money and cut out some lengthy bus travel; I can now relax into my job and find a rhythm so that I can PACE!
It's all good!
I'll even have the time (and energy) to play with my wee lass when she asks now because I'm not playing catch-up with my work (at least I hope that's what will happen) it's amazing how just one day can have such an effect! Losing the FE module has seriously improved my chances of avoiding the usual November dip (ok, mini-relapse) I'll admit, the worry is still there and I'm trying to be more optimistic; it helps that I've got a sense of control this year - just in time too!
I really think I have a shot at making this a career instead of just a job, things are looking up people! From here the future has a slight rosey tinge around the edges now and I intend to cultivate that colouring!
Wednesday, October 03, 2012
How d'ya like THEM apples?!
feedback so far from my new colleagues has been overwhelmingly positive. my class management is ok, my lesson plans are fine; not bad for someone with no formal teacher training in the bag eh?!
Thankfully, I'm mostly liking the job.
It's really just an extension of the way I worked while studying; helping other students with the material and finding resources to aid in understanding - except this time I'm actually creating some of those resources myself; for one module the 4 of us teaching it are starting totally from scratch so it's quite a challenge.
But it seems I took on more hours than I can really cope with.
I’ll be honest, I only took into account classroom hours when I agreed to my timetable – I naively didn’t realise there was so much more to being a lecturer than just tweaking my slides, showing up to impart knowledge followed by the odd bit of marking: there's student monitoring, seemingly endless meetings, millions of daily emails, course admin - and that's before I even THINK about looking at a lesson plan or my resources!
I ended up having an ME/CFS incident after my first class last thursday and had to go lie down in the medical room for an hour to stave off the shakes and imminent crash so I'd be ok to teach in the afternoon. Brought home that I need to be careful at this early stage though so it was either lose 2 HE groups or the one FE unit, thankfully it’s the FE unit I’m to lose so that’s going to free up a lot more time to allow me to pace myself; would be a total pisser if I finally get a job and get off benefits only to end up back in bed and on ESA for good.
The really annoying thing about losing the FE class though is that I nearly killed myself 2 weekends ago getting into London for a one-day passport appointment for the CRB check; cost me a sodding fortune as well! I don’t need a CRB for HE teaching so all that money and effort turned out to be unnecessary *sigh* always the way eh?!
Nothing has happened on the 'landlord selling our home' front since the agents came round to take pictures and measurements so thankfully that stressball has yet to hit; just praying it waits until i'm a little more settled at work; getting to grips with this workload AND trying to find somewhere to live would probably kill me!
Thankfully, I'm mostly liking the job.
It's really just an extension of the way I worked while studying; helping other students with the material and finding resources to aid in understanding - except this time I'm actually creating some of those resources myself; for one module the 4 of us teaching it are starting totally from scratch so it's quite a challenge.
But it seems I took on more hours than I can really cope with.
I’ll be honest, I only took into account classroom hours when I agreed to my timetable – I naively didn’t realise there was so much more to being a lecturer than just tweaking my slides, showing up to impart knowledge followed by the odd bit of marking: there's student monitoring, seemingly endless meetings, millions of daily emails, course admin - and that's before I even THINK about looking at a lesson plan or my resources!
I ended up having an ME/CFS incident after my first class last thursday and had to go lie down in the medical room for an hour to stave off the shakes and imminent crash so I'd be ok to teach in the afternoon. Brought home that I need to be careful at this early stage though so it was either lose 2 HE groups or the one FE unit, thankfully it’s the FE unit I’m to lose so that’s going to free up a lot more time to allow me to pace myself; would be a total pisser if I finally get a job and get off benefits only to end up back in bed and on ESA for good.
The really annoying thing about losing the FE class though is that I nearly killed myself 2 weekends ago getting into London for a one-day passport appointment for the CRB check; cost me a sodding fortune as well! I don’t need a CRB for HE teaching so all that money and effort turned out to be unnecessary *sigh* always the way eh?!
Nothing has happened on the 'landlord selling our home' front since the agents came round to take pictures and measurements so thankfully that stressball has yet to hit; just praying it waits until i'm a little more settled at work; getting to grips with this workload AND trying to find somewhere to live would probably kill me!
Tuesday, September 11, 2012
Working Girl
I've submitted all my paperwork for the CRB check, just waiting on the contract and my work ID to make things official - I'm teaching my first class tomorrow afternoon but thankfully won't be flying solo until the aforementioned items are sorted.
But so much for the 3.5hrs a week I was initially told about! I'm doing 3hrs a day Monday-Friday, you have NO idea how happy this makes me! I'm just glad that Stef can drive me there though; it's a 2hr bus journey each way otherwise. Having to endure that journey before and after work would make it impossible for me to function after 2 days.
I know the usual response is 'but just use the journey to rest, you only have to sit there..' How do you explain to a 'normal' that the constant stopping and starting, the motion of the bus when it's moving, the smells, the noise - it's all taxing and 'just sitting there' is not resting when you can't relax back into the seat or brace yourself on an armrest - 2 hours of sitting without proper support is very tiring! feet swinging an inch from the floor and unless you get a window seat there is nothing to lean on - but even then, the bus vibration makes it so uncomfortable that you can't lean for long.. I guess I can't blame my travel sickness on the Menieres disease because I even had it as a kid - but battling nausea on top of tiredness makes a bus journey REALLY unpleasant! If only trains were more affordable!
Yup; I need to learn to drive. I wish there was some government scheme to help with that *sigh* never going to happen though.
On the plus side - the landlord sent me a text a week or so ago announcing his intention to put our flat on the market. I didn't think of this as a plus at the time; I panicked and stressed and almost brought on a relapse. But since being offered all these hours it makes sense for us to move closer to my work so that if Stef does get a job I can continue to work without transport being an issue.
Now we just have to find accommodation in our price range that we can both agree on which fits my transport criteria and is near to a good school for Bella ... um... Wish me luck...
But so much for the 3.5hrs a week I was initially told about! I'm doing 3hrs a day Monday-Friday, you have NO idea how happy this makes me! I'm just glad that Stef can drive me there though; it's a 2hr bus journey each way otherwise. Having to endure that journey before and after work would make it impossible for me to function after 2 days.
I know the usual response is 'but just use the journey to rest, you only have to sit there..' How do you explain to a 'normal' that the constant stopping and starting, the motion of the bus when it's moving, the smells, the noise - it's all taxing and 'just sitting there' is not resting when you can't relax back into the seat or brace yourself on an armrest - 2 hours of sitting without proper support is very tiring! feet swinging an inch from the floor and unless you get a window seat there is nothing to lean on - but even then, the bus vibration makes it so uncomfortable that you can't lean for long.. I guess I can't blame my travel sickness on the Menieres disease because I even had it as a kid - but battling nausea on top of tiredness makes a bus journey REALLY unpleasant! If only trains were more affordable!
Yup; I need to learn to drive. I wish there was some government scheme to help with that *sigh* never going to happen though.
On the plus side - the landlord sent me a text a week or so ago announcing his intention to put our flat on the market. I didn't think of this as a plus at the time; I panicked and stressed and almost brought on a relapse. But since being offered all these hours it makes sense for us to move closer to my work so that if Stef does get a job I can continue to work without transport being an issue.
Now we just have to find accommodation in our price range that we can both agree on which fits my transport criteria and is near to a good school for Bella ... um... Wish me luck...
Wednesday, August 01, 2012
updates and employment
Figured I should do some updating, been slack on the website front for a variety of reasons.
Anyhow this is my current 'crash' breakdown (excluding jan/ feb due to loss of data when phone died):
having more of the days where my limbs feel too heavy but I'm able to move about and my head feels 'distant' (brain foggy) so I can carry on a conversation but the effort needed to concentrate is so tiring that I kind of dip in and out so people think I'm either being ignorant or rude. I hate it. I don't like blowing hot and cold but I can't help it - it's bloody hard work trying to be normal when every sense is being bombarded with stimuli I'm struggling to process; just want to stay in bed on days like that because although I look normal it's sooooo hard to BE normal. *sigh* one day I'll be free of this shit. Until then, carry on as 'normal'.
Despite not hearing anything from the ESA folks about a back to work appointment (something I thought would've happened by now since i'm in the work group) I've continued to apply for jobs left right and centre and I'm supposed to be starting a small job in september - 3.5hrs a week for a semester; teaching foundation degree students on their final year project module. It's not much but it is a foot in the door and I really can handle that amount of work easily so, if I do well.. fingers crossed, i'll get more hours and if i don't at least it's something else on my cv, they've also said I could get a PGCE paid for so... Just waiting on getting the paperwork to fill out to make it official.
Just trying really hard not to think about how much income i'll lose doing this - I have to start somewhere and it's either bite the bullet and TRY or just sit around forever waiting for something safer to come along. Hoping Stef will finally get a job soon too, would be nice to be free of the benefits trap - being able to move somewhere bigger would be a dream come true; I dream of a craft room...
| 2010 | 2011 | 2012 | |
|---|---|---|---|
| Amount of crashes in January | 8 | 8 | unknown |
| Amount of crashes in February | 9 | 9 | unknown |
| Amount of crashes in March | 13 | 7 | 9 |
| Amount of crashes in April | 10 | 5 | 10 |
| Amount of crashes in May | 11 | 14 | 6 |
| Amount of crashes in June | 15 | 10 | 4 |
| Amount of crashes in July | 8 | 9 | 10 |
| Amount of crashes in August | 16 | 7 | tbc |
| Amount of crashes in September | 10 | 9 | tbc |
| Amount of crashes in October | 14 | 15 | tbc |
| Amount of crashes in November | 8 | 18 | tbc |
| Average crash per month: | 11 | 10 | tbc |
having more of the days where my limbs feel too heavy but I'm able to move about and my head feels 'distant' (brain foggy) so I can carry on a conversation but the effort needed to concentrate is so tiring that I kind of dip in and out so people think I'm either being ignorant or rude. I hate it. I don't like blowing hot and cold but I can't help it - it's bloody hard work trying to be normal when every sense is being bombarded with stimuli I'm struggling to process; just want to stay in bed on days like that because although I look normal it's sooooo hard to BE normal. *sigh* one day I'll be free of this shit. Until then, carry on as 'normal'.
Despite not hearing anything from the ESA folks about a back to work appointment (something I thought would've happened by now since i'm in the work group) I've continued to apply for jobs left right and centre and I'm supposed to be starting a small job in september - 3.5hrs a week for a semester; teaching foundation degree students on their final year project module. It's not much but it is a foot in the door and I really can handle that amount of work easily so, if I do well.. fingers crossed, i'll get more hours and if i don't at least it's something else on my cv, they've also said I could get a PGCE paid for so... Just waiting on getting the paperwork to fill out to make it official.
Just trying really hard not to think about how much income i'll lose doing this - I have to start somewhere and it's either bite the bullet and TRY or just sit around forever waiting for something safer to come along. Hoping Stef will finally get a job soon too, would be nice to be free of the benefits trap - being able to move somewhere bigger would be a dream come true; I dream of a craft room...
Wednesday, February 29, 2012
Contributing factors
I've found a cheap vegepa substitute to try out at our local superdrug: I'm thinking that if it works then it's not so much the lack of DHA in Vegepa that made such a difference to me as the Vitamin D I gained from using such high doses.
Something which could be explained by this nifty little infographic:
There was talk in the CFS community a few years ago about the importance of vitamin D with regards to this illness; it's as good a thing to try as any other I guess. ..And at least I'll know once and for all if the ridiculous expense of Vegepa was worth it or not.
I'm having a 'normal' day today; Nearly killed myself doing the Galleria walk yesterday; I get all the way there without a problem and that's a good 30 minute walk, I visit 2 shops, sit and have food and drink for 20 minutes then start walking back; I make it about 10 minutes down the road and the fatigue kicks in - it's like walking through treacle, every step is an effort in will power - by the time I get to the small hill leading onto my street I'm crying inside from the effort but because I have bella asleep in her buggy I can't just lie down or sit on a verge until I have the energy to get home, I have to push through it and get us both home safely.
Then I'm dead for a good couple of hours. BUT I made it home, I did my self imposed exercise AND last night I slept 8 hours straight through without any issues and woke up this morning REFRESHED!
I can't do that walk every day but I do it when I can and it's easier with the buggy to walk faster than I do by myself so I can push through the fatigue wall. It's tough but if I don't keep pushing myself every now and again I'll be useless and even weaker physically than I am now.
Something which could be explained by this nifty little infographic:
There was talk in the CFS community a few years ago about the importance of vitamin D with regards to this illness; it's as good a thing to try as any other I guess. ..And at least I'll know once and for all if the ridiculous expense of Vegepa was worth it or not.
I'm having a 'normal' day today; Nearly killed myself doing the Galleria walk yesterday; I get all the way there without a problem and that's a good 30 minute walk, I visit 2 shops, sit and have food and drink for 20 minutes then start walking back; I make it about 10 minutes down the road and the fatigue kicks in - it's like walking through treacle, every step is an effort in will power - by the time I get to the small hill leading onto my street I'm crying inside from the effort but because I have bella asleep in her buggy I can't just lie down or sit on a verge until I have the energy to get home, I have to push through it and get us both home safely.
Then I'm dead for a good couple of hours. BUT I made it home, I did my self imposed exercise AND last night I slept 8 hours straight through without any issues and woke up this morning REFRESHED!
I can't do that walk every day but I do it when I can and it's easier with the buggy to walk faster than I do by myself so I can push through the fatigue wall. It's tough but if I don't keep pushing myself every now and again I'll be useless and even weaker physically than I am now.
Wednesday, February 22, 2012
calorie counting
Been doing a little thinking (dangerous eh?!) and perhaps the lack of Vegepa isn't contributing as much to my current ME-ish state as much as I thought; I put on a LOT of weight during my last year at uni and the trend continued afterwards.
Stef and I are currently trying to lose the excess and I'm hoping it'll give my body a fighting chance against the slew of consecutive illnesses I've had to contend with since completing my degree. I need to lose a stone and a half minimum to be down to my borderline 'ideal' weight - that may not seem much to some people but when you consider just how sedentary my life is you'll realise that losing ANY weight is going to be tough.
I walked to and from the Galleria yesterday; I was out for 3 hours and when I got back just managed to eat a slice of pie and collapsed into bed for the afternoon until Stef woke me for pancakes at 5:30pm, I was back in bed again by 10:30pm and struggled to get out of bed 15 minutes ago (10:30am) but yesterday I was 329 calories under my 1200 allowance despite it being pancake day so go me!
I'm all signed up with my fitness pal and keeping a careful track of what I eat and do (very much missing the convenience of the bar code scanner on the android app now that my phone is broken - and the crash calendar/ period tracker I was using to record the episodes of CFS, luckily most is backed up and I have recorded the numbers on here so it's not a total loss of 2 years data) calorie counting is a pain though - I'm just lucky Stef is doing most of the cooking because just working out my breakfast of yoghurt, banana and honey this morning taxed my poor brain - I'm so TIRED! ..and I'm struggling to eat this even though I need the food to give me some semblance of energy.
Lets hope the anticipated weight loss has the desired effect and I get back to feeling brighter and more 'with it' and less prone to every bug my darling daughter brings home from nursery; if nothing else I'm aiming to fit in the most gorgeous dress I own that was aired just once pre-pregnancy so I don't have to buy anything for the 3 weddings we have to attend this year - I'm on a budget don'cha know.
One thing I have discovered is that drinking a mug of Clipper 'sleep easy' tea with a teaspoonful of honey to sweeten it before bed does seem to help me drop off; ok so it may just be that the exercise I'm forcing myself to do when I can is the real reason but at least I'm getting SOME decent sleep - for the last few weeks I've been ghostly pale with black circles under my eyes; hopefully this new routine will alleviate the death camp look and bring me back to a healthier complexion and more refreshing sleep.
Sunday, February 19, 2012
What's the hold up?
I was told at the start of December that I'm beginning the move to ESA, I filled in and returned the ATOS form and now I'm still waiting to hear back from them. I'm stressing about the family budget, I'm stressing about the fact that I'm just not coming out of this ME/CFS funk; every time I think i'm heading into a period of remission i get a cold/ virus and it's straight back into relapseville.
I can't afford any more VegEPA and haven't been taking them since at least Novemeber (maybe longer; my memory fails me) and it really shows; my mood is slanted towards the pessimistic, my brain is sluggish and I'm back to being too easily distracted to really concentrate on things - and the thing that for me fixes all these issues I can't afford to get until I have a job - but without it I'm probably not likely to get a job - it's a vicious circle!
I put in a bid for some freelance work after having no joy with 'real' jobs but 'surprise' I've had no response back; even if i did, I've since looked into how that will affect our finances and unless Stef finds work I'm better off not wading into the 'self employed' quagmire; My brain just couldn't take in the requirements for it and it seems i'd be punished by the DWP for attempting to work my own way; I may be wrong there but like I said, brain glitching a lot lately.
I was taking between 6-8 Vegepa a day, now I'm taking none; I was able to complete a degree with 1st class honours and lead sessions at conferences; now every item is a 'thing or 'thingy' because the aphasia is kicking in almost constantly and I just can't find words (thank god for online thesaurus eh?!) ..and i'm lying in bed half the night trying to sleep and only dozing and dreaming and waking feeling sluggish and unrefreshed.
My diet has improved, the only stress I have is self imposed over financial possibilities; the only major difference in my oral intake is zero Vegepa - you do the maths.
If ESA folk would just tell me where I stand and what's happening even the stress would vanish as I could then get organised; but obviously my body now relies on that bloody supplement; either I've been taking it too long or it really does help on its own - or it's one hell of a placebo effect. I need to find £11pw for a pot of the stuff to help me get my brain and sleeping patterns back! if only the NHS provided it *sigh* it's a dear do being ill.
Tuesday, January 03, 2012
Praise
Just had a fabulous boost to my self esteem in the form of an email forwarded to me by the team leader of the inclusive culture project:
Yup, I still 'got it' *grin* not bad for someone who can't even get out of bed for half the month eh?! I am SO getting me a job. ..Somewhere.
Dear Team,
I have met with Vicky Stringer for a longer talk on my bit for inclusivity. Wow - what a 'can do' attitude! She is full of ideas and was often one step ahead. (Not difficult in my case I KNOW!)
Then, last Wednesday she came to the Health and Human Sciences conference, was very supportive of inclusivity there, made contacts all over the place and was a superb ambassador for the whole thing. Has sent me help with taking part in twitter. For a student who is not always very well, she is investing a tremendous amount in all this. It's an absolute priviledge to work with some one so tuned in and full of excellent ideas about how to push things forward. So dear colleagues, I'd like to say that who ever thought of her for the student choice on this project has made an inspired choice. As if you did not already know....
Yup, I still 'got it' *grin* not bad for someone who can't even get out of bed for half the month eh?! I am SO getting me a job. ..Somewhere.
Sunday, December 11, 2011
moving past pessimism - sort of..
I've decided to ignore any fears regarding the ESA appointment and focus on the hope that they can help me find a job that works around being ill. I figure if I can get into a routine it will help me get back into pacing, having a provable income means I can start looking for somewhere more suitable for us to live without worrying who I can ask to be my guarantor (letting agents don't seem to like folk on benefits down here - even though that's a more reliable income than wages these days!)
I can also use whatever job they 'force' me into as a way of proving (both to myself and future employers) that I'm a good bet; one day I hope to get something that relates both to my degree and the experience I've built up in e-learning and blended learning theory, techniques and applications (software and web applications that is) and help make a difference in the way knowledge is passed on.
I've accepted that learning to drive is not on my list of future activities: even if I did we couldn't afford insurance for both of us on one car never mind running 2 cars. So bus travel is inevitable unless all my campaigning and volunteering pays off and I can get work at the uni - ideal as it's only a 10 minute walk!
But by god doing the ATOS medical assessment form is depressing!
Reading it back to myself I'll be surprised if they consider me fit to breathe never mind work!..and that's with just the main crap I deal with written down - not the little things, just the big 3: fatigue, brain fog and pain. The thing is - yes, I know there is an average of 11 days a month where I can't work because I'm neither use nor ornament; but the other 19-20 days I can do a lot if it's computer based work; I figure I can easily do 12 hrs a week (3-4hrs a day so long as the days are spaced a day apart ie mon/wed) assuming I need to travel the national average of 40mins each way, if I can work from home I can up that to 5, maybe even 7 hours a day (depending on the work, though at my present levels 7 hours is definitely pushing it)
You see, I am organised; so long as I know what is expected of me and I can work around my illness to my own schedule I can get things done - in some cases more efficiently than a 'normal' person. Unless of course I am just fooling myself there in an attempt to think positive,,? NO, aaaarrgh! say it isn't so!
*ahem*
So despite the depressing picture being painted in my assessment form I'm hoping at the physical assessment they'll say "cool! go here and we'll find you a job as a virtual worker" even if it's boring monkey brain data entry I don't care so long as the pay is comparable to my current income and it means I can actually better our family situation - after all, when working I'll be useless at home for anything else so why give up quality of life to be worse off..?
..though I'd much rather they helped me find funding to do a masters/ Phd so I could try trolling for work at the UoH as a visiting lecturer in the computer science department for one or 2 modules.. £45ph? Yes please! And I have so many ideas on ways to present the material to make it less hard on me and more engaging for the students.. Ahh.. If wishes were horses *sigh*
I can also use whatever job they 'force' me into as a way of proving (both to myself and future employers) that I'm a good bet; one day I hope to get something that relates both to my degree and the experience I've built up in e-learning and blended learning theory, techniques and applications (software and web applications that is) and help make a difference in the way knowledge is passed on.
I've accepted that learning to drive is not on my list of future activities: even if I did we couldn't afford insurance for both of us on one car never mind running 2 cars. So bus travel is inevitable unless all my campaigning and volunteering pays off and I can get work at the uni - ideal as it's only a 10 minute walk!
But by god doing the ATOS medical assessment form is depressing!
Reading it back to myself I'll be surprised if they consider me fit to breathe never mind work!..and that's with just the main crap I deal with written down - not the little things, just the big 3: fatigue, brain fog and pain. The thing is - yes, I know there is an average of 11 days a month where I can't work because I'm neither use nor ornament; but the other 19-20 days I can do a lot if it's computer based work; I figure I can easily do 12 hrs a week (3-4hrs a day so long as the days are spaced a day apart ie mon/wed) assuming I need to travel the national average of 40mins each way, if I can work from home I can up that to 5, maybe even 7 hours a day (depending on the work, though at my present levels 7 hours is definitely pushing it)
You see, I am organised; so long as I know what is expected of me and I can work around my illness to my own schedule I can get things done - in some cases more efficiently than a 'normal' person. Unless of course I am just fooling myself there in an attempt to think positive,,? NO, aaaarrgh! say it isn't so!
*ahem*
So despite the depressing picture being painted in my assessment form I'm hoping at the physical assessment they'll say "cool! go here and we'll find you a job as a virtual worker" even if it's boring monkey brain data entry I don't care so long as the pay is comparable to my current income and it means I can actually better our family situation - after all, when working I'll be useless at home for anything else so why give up quality of life to be worse off..?
..though I'd much rather they helped me find funding to do a masters/ Phd so I could try trolling for work at the UoH as a visiting lecturer in the computer science department for one or 2 modules.. £45ph? Yes please! And I have so many ideas on ways to present the material to make it less hard on me and more engaging for the students.. Ahh.. If wishes were horses *sigh*
Tuesday, December 06, 2011
So much for that idea..
I did make a start, I have a wordpress installation all set up with the basics ready for a move and a cull - but sadly the day after posting that last I fell ill again, and I haven't been fit for anything since - I've had exactly 3 days (not even in a row which sucks) where I've felt 'normal' as in no brain fog/ cfs or menieres/ sickness or flu to deal with since September 1st. considering we're now 6 days into December I'd say that sucks massive sweaty donkey bollocks wouldn't you..?
So, as is par for the course this is when the 'bad' news hits; it always comes just when I'm at my lowest. While I'm trying so hard to stay positive and think about the possibility of working I'm informed of the need for a medical assessment and transfer to ESA so they can assess my fitness to work.
I will admit to conflicting emotions; fear that i'll lose the financial security of my benefits and be forced into some monkey brain job that sucks all the joy out of living and leaves me useless at home for anything involving quality of life or ability to be a decent mum.
..But the even greater fear is that they'll confirm I am indeed useless and will never be able to work.
I'm worried that as my benefits are the sole income of our household we'll struggle for a couple of months to pay rent and bills or buy food - stupid I know as if I lose incapacity i'll just be put on JSA and so will Stef - in fact we may even be better off that way as we'd both have an income AND we'd get full housing/ council tax benefit - and possibly income support..
But change is scary, any kind of change be it financial, emotional or other; I just wish it wasn't also stressfull. I need to be well so I can try and find a job that I can hold down: I don't want to be told that chances are less than slim. If only someone would offer me work that would allow me to work on my laptop from bed.
This is why I loved studying; I felt in control, I felt useful. OK so I never once hit a deadline and had extenuating circumstances for everything - but I did good work, I learned things and I got a 1st class honours degree from doing so - that is a great achievement.
Sadly the workplace rarely allows you to miss a deadline; extenuating circumstances do not exist in the business world and home working is still a rarity so working from my bed is still not an option. I guess it's time to face the fact that unless the ESA folk know of a job that lets me work as though I was studying I'm stuck being useless forever - or until the working world catches up to the digital revolution at least.
As before the only 'crashes' I've recorded on here are the 'full day in bed/ incapacitated, no good to anyone' days - the cognitive and half days I don't bother with as I can still get some things done(even if it's just doing a load of washing/ sending a few emails or making sure I eat something)
So, as is par for the course this is when the 'bad' news hits; it always comes just when I'm at my lowest. While I'm trying so hard to stay positive and think about the possibility of working I'm informed of the need for a medical assessment and transfer to ESA so they can assess my fitness to work.
I will admit to conflicting emotions; fear that i'll lose the financial security of my benefits and be forced into some monkey brain job that sucks all the joy out of living and leaves me useless at home for anything involving quality of life or ability to be a decent mum.
..But the even greater fear is that they'll confirm I am indeed useless and will never be able to work.
I'm worried that as my benefits are the sole income of our household we'll struggle for a couple of months to pay rent and bills or buy food - stupid I know as if I lose incapacity i'll just be put on JSA and so will Stef - in fact we may even be better off that way as we'd both have an income AND we'd get full housing/ council tax benefit - and possibly income support..
But change is scary, any kind of change be it financial, emotional or other; I just wish it wasn't also stressfull. I need to be well so I can try and find a job that I can hold down: I don't want to be told that chances are less than slim. If only someone would offer me work that would allow me to work on my laptop from bed.
This is why I loved studying; I felt in control, I felt useful. OK so I never once hit a deadline and had extenuating circumstances for everything - but I did good work, I learned things and I got a 1st class honours degree from doing so - that is a great achievement.
Sadly the workplace rarely allows you to miss a deadline; extenuating circumstances do not exist in the business world and home working is still a rarity so working from my bed is still not an option. I guess it's time to face the fact that unless the ESA folk know of a job that lets me work as though I was studying I'm stuck being useless forever - or until the working world catches up to the digital revolution at least.
| 2010 | 2011 | |
|---|---|---|
| Amount of crashes in January | 8 | 8 |
| Amount of crashes in February | 9 | 9 |
| Amount of crashes in March | 13 | 7 |
| Amount of crashes in April | 10 | 5 |
| Amount of crashes in May | 11 | 14 |
| Amount of crashes in June | 15 | 10 |
| Amount of crashes in July | 8 | 9 |
| Amount of crashes in August | 16 | 7 |
| Amount of crashes in September | 10 | 9 |
| Amount of crashes in October | 14 | 15 |
| Amount of crashes in November | 8 | 18 |
| Average crash per month: | 11 | 10 |
Thursday, September 29, 2011
Moving on
Blogger has been good to me, really it has, but now it's time to do as I've been intending to do for quite a while and shift over to the revamped CFS site i created on my personal domain, that's right I'm moving to http://rosevibe.me.uk/cfs it may take a few days from now for the new blog to be live while I tweak some things and install others, but the new site should be fully accessible for those of you using screen readers and the like.
Fingers crossed it also means i'll be more regular in my updates *grin* for example I can't believe I neglected to mention that I managed a first class honours in my degree subject (Bsc IT web based systems) and that since leaving uni this week is the first time I've felt any inclination to do 'webstuff'. I was totally burned out, suffered a mini-relapse and have some recurring mystery abdominal pain that the GP thought was appendicitis (it wasn't) but as with the CFS I don't see any point going back to the DR's as the specialists in 3 different departments at the hospital ran tests and couldn't figure out the cause so why waste our time.
Rightio, back to the exporting and tweaking of the new home; I'll be posting once more on here to share the address of the new blogs feed for those of you so interested, otherwise it's adios blogger! Let's always be friends..
Saturday, September 03, 2011
Hospital visit
so yeah, 3 years ago today i was lying in a hospital bed with my newborn. Yesterday i was lying in a hospital bed due to abdominal pains; stef has been joking that I wanted to relive the birth, I didn't see the humour.
The pain started at five am, it was a sharp burning slashing pain that came in waves, I tried to ignore it as I've had it before (though not at such an intense level) I just assumed I'd pulled something inside to do with the scar - like I say I've had it before and it always went away so no point bothering the Dr.
This time though the pain just kept growing to the point that at 8am I was sat on the couch with Bella and I passed out for a few seconds - I have only ever fainted twice before and both times were due to an infection so.. Drs.
I went in, got poked and prodded - he pressed down on the tender spot and I screamed and burst into tears, he then phoned the hospital and asked that I be admitted with possible appendicitis. Great.
We got to WGC and I was admitted, disrobed and left on a bed for several folk to come and do more of the prodding and poking - but by now the pain had practically disappeared as it was just a dull all over abdominal ache that made it impossible for me to recall just where it had hurt the most before.
The surgeon on call decided it was unlikely to be appendicitis and I was sent in for observation. All day I was stuck in a hospital bed with the pain coming and going - always seemingly gone when anyone medical was around to check on me; which figures..
After an ultrasound, an internal, swabs, lots of external poking plus urine tests and blood work I was given a possible explanation based soley on theory - the gynaecology lass suggested that it could be adhesions and the first examination by the GP may have 'done' something to help push whatever was causing the problem back into place, the surgeon said I may have had a cyst of some kind and again the GP examination burst it hence big stab of pain and then very little else.. To be honest by 8pm I didn't care, I just wanted to go home.
As usual they could find nothing wrong with me, tests came back negative and I figured I could manage it myself with painkillers so when they asked if it had gone I said yes. ..Because it had gone back to the dull ache, ok so 10mins later when we were back in the car it came back but it had been doing so all day so what was the point in my taking up a bed that they obviously needed when they could do sod all for me that I couldn't do for myself at home..?
If I can avoid the medical profession I will, I have ME/CFS that they cannot help me with - so I do the best I can alone, if I were to tell them every time some symptom returns or if I'm finding it hard to cope with something I'd be there every bloody week! The Menieres disease; likewise. I go in for my betahistine prescriptions as they do help keep it under control - mostly.. But if I were to go in every time I had an attack again i'd be in there at least once a fortnight - so just adding a mystery fluctuating abdominal pain to the list of things I sort out myself is nothing.
All hail over the counter pain pills eh..?
This time though the pain just kept growing to the point that at 8am I was sat on the couch with Bella and I passed out for a few seconds - I have only ever fainted twice before and both times were due to an infection so.. Drs.
I went in, got poked and prodded - he pressed down on the tender spot and I screamed and burst into tears, he then phoned the hospital and asked that I be admitted with possible appendicitis. Great.
We got to WGC and I was admitted, disrobed and left on a bed for several folk to come and do more of the prodding and poking - but by now the pain had practically disappeared as it was just a dull all over abdominal ache that made it impossible for me to recall just where it had hurt the most before.
The surgeon on call decided it was unlikely to be appendicitis and I was sent in for observation. All day I was stuck in a hospital bed with the pain coming and going - always seemingly gone when anyone medical was around to check on me; which figures..
After an ultrasound, an internal, swabs, lots of external poking plus urine tests and blood work I was given a possible explanation based soley on theory - the gynaecology lass suggested that it could be adhesions and the first examination by the GP may have 'done' something to help push whatever was causing the problem back into place, the surgeon said I may have had a cyst of some kind and again the GP examination burst it hence big stab of pain and then very little else.. To be honest by 8pm I didn't care, I just wanted to go home.
As usual they could find nothing wrong with me, tests came back negative and I figured I could manage it myself with painkillers so when they asked if it had gone I said yes. ..Because it had gone back to the dull ache, ok so 10mins later when we were back in the car it came back but it had been doing so all day so what was the point in my taking up a bed that they obviously needed when they could do sod all for me that I couldn't do for myself at home..?
If I can avoid the medical profession I will, I have ME/CFS that they cannot help me with - so I do the best I can alone, if I were to tell them every time some symptom returns or if I'm finding it hard to cope with something I'd be there every bloody week! The Menieres disease; likewise. I go in for my betahistine prescriptions as they do help keep it under control - mostly.. But if I were to go in every time I had an attack again i'd be in there at least once a fortnight - so just adding a mystery fluctuating abdominal pain to the list of things I sort out myself is nothing.
All hail over the counter pain pills eh..?
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