Tuesday, July 25, 2006

Blessings in disguise

Many times I've had the thought that things happen for a reason - you know what I mean the whole 'have to have the bad in order to fully appreciate the good' malarky.

If I'd not come down with CFS I would probably have carried on working all hours and filling my non-working hours with clubbing and parties, i was a wreck, my priorities were completely skewed.. I had no life really.
Now I've got a fabulous man (who I'd never have met without the time I've had through this illness) I've started learning some new skills, I'm getting back into my music (slowly) I've discoverd more new things since meeting Stef than I'd known in the whole 10 years I was in manchester 'living the life'..
I've discovered who my true friends are, divested myself of all the 'deadwood' and generally wander around 'smelling the roses' as they say.
CFS has been good to me, I'm lucky.

Now the thing that prompted these musings today, was the lovely walk I had to the clinic for my daily dressing change.
I've been complaining for ages about my sleep patterns, I say I'll go to bed early.. But after a few days it slips and I'm back to slinking off at around 2am again, I say I'll get up early - doesn't happen, i'll lounge about and then go online, nothing gets done.. I just procrastinate because there is nothing to really structure my day around.
Not so since I had this lil bit of nastiness infect my behind *grin* talk about a 'kick' *chuckle*
I've had to be up early every day in order to shower and clean the wound before walking down to the clinic. This means I'm also getting my daily 30min walk in - all good eh?!

The thing is, once I've been up and out of the house, I feel more mentally awake. Even if I've not left the house because the nurse is coming to me, once I'm showered and waiting around for her - I see things that need doing.
I've created 4 necklaces this weekend, the washing has become less a killimanjaro and more of a molehill, the kitchen is clean, the living room is clean, I changed the bedding and even did some baking - all done over long stretches of time with plenty of rest breaks thrown in for good measure.
So I'm getting to bed earlier, getting up much earlier.. If only I could get some decent sleep life would be bloody fantastic!

Monday, July 24, 2006

nursing - the best career choice for sadists

Seriously, I've decided that the nurses at hope hospital just delight in pain - other peoples of course.

Went in for my outpatient appointment today (at the end of which I was told to make another for 3 weeks time *sigh*) The nurse glanced at the dressings I'd brought in and declared she wouldn't use the aquacel as she doesn't like using it because it can cause a wound to 'over granulate' (?) then she swabbed my wound with silver nitrate, put another dry dressing over the top and sent me off with tears in my eyes - it was burning like a fecker for the best part of 2 hours after she did that, it's only just calmed down again
"This might sting a bit" she said.. HA! try burns like a live coal has been shoved into my backside.


Still, it's not in need of packing anymore so all is good there.
Despite only getting about 2-3 hours sleep last night I'm feeling pretty good today, doing a clean of the house (and I'm pacing it, getting told off by Dr. Heaney is not a pleasent experience - especially when it's for something I already know!) I figured washing up, sweeping and mopping takes the place of my 30min daily walk so it's not like i'll be overdoing anything, a good 30 min rest between jobs should do nicely *grin* I'm just so glad it's cooled down, it's lovely out!

Friday, July 21, 2006

Snake oil, going cheap..

I went to a talk given by Professor Puri last night, I was actually thinking at the time of several PC salesmen I knew who like to blind you with science, Polly in particular - bloody great guy, you can have a laugh and a joke with him but you couldn't rely on him for anything resembling the truth..
Prof Puri reminded me of Polly. Great bloke seemingly, but has a tendancy to wander off topic, not fully answer questions and rely a lot on the scientific names and explanations of cell structure and brain chemistry to assure us that ONLY this product will do..

I am of course talking about VegEPA.

I've been taking it myself for about a month now, to be honest, I've noticed no real change from my previous brand of Omega 3 fish oil supplement - other than price.

I'll admit that taking some form of Omega 3 supplement seems to definitely have an effect on the CFS symptoms - I know if I forget or go a few days without them I have a full on recurrence of the aches and the brain fog - but does this necessarily mean the VegEPA is as good as he's touting?

You may wonder why I'm now questioning this, it's because I had a chat with my specialist at Hope today. It seems that he has heard of the work Prof. Puri has been putting in regarding the whole fatty acids thing, his department contacted the Hammersmith (where Prof. Puri works) in order to request more detailed information, so that they could send some samples of their own to him - the Hammersmith apparantly denied all knowledge of any such trials or experiments.

I find it hard to believe that such a thing could be published without some form of validation, but it does raise a couple of questions about why this product is being pushed so hard at us, it's unavailable on prescription and only commercially available from the one source - and as one reviewer on amazon stated:
There are no controlled medical trials quoted to back up anecdotal evidence.

It does make you wonder, Is Prof. Puri another polly? (albeit with better credentials) After sitting through his entertaining talk last night I'd hate to think so, he certainly sounded knowledgable and up front on the subject - but then don't all good salesmen?

In other news, I'm still having to undergo the arse packing procedure. Seems the healing is going well, but not as swiftly as I'd desire (so no change on the health front there then) it means even were I not at the hospital on monday I'd still have to forego the visit to the In-laws because I've got the nurse coming round to re-dress the wound all weekend.
*sigh* Hope this doesn't mean I miss out on the jazz festival too, I'll be gutted if that happens.

Thursday, July 20, 2006


I was supposed to be accompanying the blokey down south to a family party this weekend, Italian relatives, good food.. Would have been great.
Sadly I have an appointment to see Dr. Heaney on friday and an appointment about my bum on the monday - means there's no hope of me heading down and eating myself into a coma *sniff* it's not fair.

On the plus side, the abscess is healing nicely, I can walk, sit and I'm off the painkillers (thankfully, bad enough being knocked out because of the heat without being drugged as well) the nurse who packed the wound today thinks I may not need it doing by weekend, this is a good thing - the dressing is a little uncomfortable to sit on, to say the least!

I'm still back to feeling fatigued again - whether it's the heat, the surgery or a tiny relapse I'm not sure, I'm hoping it's just the heat.. I'm always crappy when it's hot so it would mean I'm still building up my stamina if that's all it is - if it isn't, somehow I've started doing too much again.
*sigh* this pacing malarky is hard enough without all the external variables you need to consider!

On the plus side, the aches are not as bad as they usually are in the heat (though this could be down to the ultra strength painkillers I've been mainlining all week because of my backside) Still, even if I'm missing out on a party, I don't need to miss out on good company.
I plan on heading into town on saturday to catch some of the jazz festival - various members of the bury/ bolton me support group are coming down so it'll be a good chance to meet some of 'em.
That and I love me some music.. I just hope it's not raining - or too hot!

Thursday, July 13, 2006

perianal is very painful

I should never whinge about the cfs aches ever again - not now I've experienced the searing agony of a perianal abscess.

It started on Thursday - I just thought it was a heat rash at first, quite a reasonable supposition given the heat and the clothing I wore that day, plus all the walking I did - those jeans chafe!
Sadly by 5am Monday morning it was painfully obvious that this was no mere rash - nor even just a spot, so an emergency Dr's appointment was made.
Within 30 seconds of glancing at my nether regions he'd stated that it needed to be 'seen to' and was on the phone to the surgeon on call at hope hospital.

By 6pm I was in the A&E reception giving my details to the triage nurse, about an hour and a half later I was admitted to a ward and put on a drip (something I never wish to experience again) then at 9.45 was told that as I wouldn't be operated on that night I could eat - so my lovely man went home, cooked me some pasta and brought it back for me.
Sadly I should probably have not bothered as at around 6am the next morning I threw it all straight back up after a nasty post-painkiller incident..

..Man, that was embarrasing!

I'd had no sleep because of the pain, they couldn't give me any more painkillers until 5am despite the fact the previous ones had worn off and I couldn't stop crying because of the burning agony in my arse. At 5am, Anne, the senior nurse on the ward, gave me some stuff that's 'just like morphine' so I fell into a drug induced doze for around 2 hours, I woke up feeling as though my life was being drained out of the drip (it was empty and no one had been around to change it) I was trying to avoid the rabbits (don't ask, like I said, it was the drugs) and as after 30 minutes no one had been to see me despite my buzzer going, I decided to navigate my way to the reception (slow going as I was dragging myself along gripping the drip carrier for dear life)

At this time, as luck would have it, the nurses were changing shift. I called out for someone to come and remove the drip as by now it was making me nauseous and in my head all I could hear were sucking sounds and the only thought I had was "PLEASE GET IT OFF ME" I must have looked a sight in my nightie hair disheveled and hanging onto my metal stand for dear life.

the first 2 nurses I appealed to just walked straight passed me, the third came over and said I had to go back to my bed and they'd see to me there, no one made a move to remove the offending article which by now seemed to be causing me undue distress, it actually hurt.
Then I started to pass out, the nurse grabbed me as my eyes rolled back and I hit the floor, I heard her call out for someone to help her, then people started trying to get me onto a chair to take me back to my bed, I managed to tell them I was going to be sick in time for a container to be thrust under my face, then I spewed up my lovely pasta meal - I remember thinking I was sure I'd chewed the mushrooms better than that..

I started thinking a little clearer after that but by then no one was listening to me, I tried to explain I couldn't sit and struggled as they tried to force me onto this chair.. To no avail - I was pushed down and the acute pain of my abscess coming into contact with the seat brought me fully out of the drug haze, people were laughing at me - I was so embarrassed.. And it still took another 20 minutes for Anne to come and remove the drip that had caused all the fuss in the first place.
I felt like an idiot!

Anyhow, then the anesthetist came round, that was probably the most pleasant part of my day.
He explained that the Dr's were being phased out of his specialty and that special nurses were being trained up to take his place, then the nurse he was training took over the conversation - she gave the most thorough run down on going under general anesthetic I've ever heard in my life - and I've gone under on numerous occasions!

Sadly this talk was interrupted by several doctors coming in to peruse my nether regions, measuring and making notes on the shape and location of my pus filled growth - I have no dignity any more, no longer need I shy away from wearing a bikini - I may even try out a nudist camp, it would be far less embarrassing than the last few days in hospital have been.

anyhow at 11am I was taken away by the lovely nurse Wilma (who had to go searching for my notes, someone had taken them off the bed and left them at reception) to go to the room they administer the general anesthetic, the last thing I remember are the words "I'm just going to inject this painkiller into your arm.. It should make you feel a little woozy" and then I was coming around in the recovery room with Wilma leaning over me removing my oxygen mask, I don't remember much of that day as I spent most of it sleeping.
Thankfully I woke up just before the drip ran out this time so I could call for assistance before it began causing me pain.

I tried to sleep the night through but one of the women on the ward was calling for a nurse every 5 minutes, I think at one point they disabled her button because then she started literally calling - quite pitifully "nurse, nurse, someone help me, please help me, nurse.." And so on, then she started tapping on her bed frame obviously trying to get some attention. So I went out to the reception to get someone for her.

I had some more painkillers and slept again, then I needed the loo - I'd been dreading this because of the dressing, I got the nurse to help me to the bathroom, she left me there and said to call her when I was done, when I went in however I couldn't help but notice that there was excrement all over the seat - I stumbled back out to reception and was ignored by the 3 staff members there so I went back to the toilet and pressed the call button. All I wanted was some cleanser so I could just go to the toilet - I was directed to the next room instead - where the seat was covered in urine - and the same blood spotted urine sample from the day before was situated under the sink in it's cardboard container.
This time I just shut the door and cleaned the seat with tissue and hand soap before lining the toilet seat with more tissue and doing my business.

I was so wiped out after that I crashed again. The whole time I was there - only the anesthetist knew what CFS was, it was completely ignored by everyone else - even the Dr asked what I did for a living after finding out I had it.

When I got up again I was directed to the shower, I asked if I could wash properly and she said that it would be a lot easier for me if I cleaned the dressing - it was not made clear that I should completely remove the dressing (and to be honest, my bathroom at home is cleaner than the ones at the hospital - I wasn't sure removing it was a good idea)

I had my shower, then had to wait again for a nurse to be free to come change my dressing - she was none too gentle about it either. I literally screamed into my pillow and couldn't stop crying for a good 10 minutes afterwards, I requested that the curtains stay closed because I was just so embarrassed about being so pitiful. You'd never believe I once did martial arts, my pain threshold now is none existent.

About an hour later I began throwing up for no apparent reason.
Turns out codeine has that effect.
I was told I couldn't go home until that was under control.. Fair enough - 2 hours later, I had it seemingly under control, asked if I could go home and was told I'd need to be seen by a Dr, then I was left alone for another hour, my blokey rang up to see when he could come get me, they told him they were waiting on my prescription being filled, when it finally came it was gone 6pm. The package I'd been waiting for consisted of a pack of codeine and a pack of paracetamol - no dressings, antibiotics, just painkillers.
I've never been so glad to leave a place in my life.

I was told that I had to go see the district nurse at swinton medical centre at 12:00 (today) to get my dressing changed. I assumed she meant my doctors surgery (poplars medical centre in swinton) and so after showering I painfully made my way downstairs and knelt in the passenger side footwell of the blokeys fiat coupe with my head on the seat for the nightmare 10minute journey, he half carried me out of the car to the reception where we were told we had the wrong place.
By this time I was in agony, nevertheless we went to the indicated clinic (not medical centre, clinic) where they also knew nothing about me coming in. I just kept on crying, I was tired, in pain and my backside was wet through from the shower (the hospital nurse said I had to try and clean before the dressing was changed)
The nurse who came through went and checked with all the teams who were left (clinic finished at 11.30) and said they thought they'd had a referral but she wasn't sure, she took me through to the treatment room , expressed disgust that I'd been sent home with no dressings, changed the one I had on with the gentlest hands I've ever experienced and calmed me down marvelously - she even managed to get me a prescription sorted for a weeks worth of dressings and organised a nurse to come to the house until Sunday.
Hopefully by Monday I'll be fit enough to get there myself without wincing with every step.

In the meantime, I cannot sit down, too much movement hurts, I've come on again and I'm dreading a bowel movement, roll on it being healed.

Now all I want to know is:


Monday, July 03, 2006

heat and ugh!

I wish the weather would settle down, it's bad enough feeling pms'y and crap without the nasty heat aches kicking in again.

I've been wondering lately if maybe the pill has something to do with cfs/ me. There must be some reason that women are 3 times more likely to come down with this crappy illness than men, I know my mood swings were worse last time I was on the pill - my libido disappeared and I ached a lot more, it worries me because I'm about to start taking it again - albeit a different type.

The problem is, I've always needed help regulating my periods - when I was a kid they'd incapacitate me for a couple of days, the pain was intense and the flow was so heavy it knocked me out.. I'm not quite as bad as I used to be but I still suffer with 'em and only taking the pill seems to help - not only does it ensure I know when I'll start and end the cycle (which is not the case when I'm off it) but the severity is lessened.

Meh, it's too hot to think and I hurt but it's a thought worth following up on.
My Dr. suggested I email Prof Puri to see if it's anything he's come across in his research - I may have to do this.