Where did they go??

I used to wake up at night, almost every night, with cramps and spasms. This has all but vanished. They haven't gone completely but compared to what it used to be like it's like nothing is wrong sometimes. My headaches aren't anywhere near as bad as they were. I'm not a person to take pills for the hell of it so every headache I used to just grin and bear until it passed, but these days I'm not expecting my mid-morning apres-steroid headache.

What I'm trying to say here is that the most uncomfortable part of this illness seems to have passed. Every day I'm still fully aware of having C.I.D.P. but through careful medical planing and a bit of physio I'm feeling so much better.

All of that makes me wonder where all the pain went. Is it hiding under a rock somewhere waiting to strike again when I least expect it? Will I wake up some day to find that I'm back to square one? In all probability it's unlikely but these thoughts linger in the back of my head sometimes.

If I stayed as I am now for the rest of my life without improving any more I wouldn't complain but I'm not sure how much of a head wreck it would be if I was to start getting worse again. For today I'm happy with everything, I can walk, cycle, go fishing, play my guitar and fiddle and do it all pretty much pain free and I seem to be improving bit by bit all the time. The doctor has reduced my steroid dose again and that's a good thing and the amount of time I'll be spending in hospital is set to reduce as well, instead of coming in every five weeks I'll be in every six weeks. By this time next year we reckon we could stretch that out to nine weeks. It's all good news so staying positive in my head is important and worrying about going backwards is pointless, as for where the pain is gone, I hope some big banker or bondholder has it instead.

Back again

I'm back on my blog and back in the hospital, my city residence as I like to call it. I haven't written anything for ages 'coz my laptop has been on the blink and shuts down randomly and if I'm half way through something I lose the lot.

The hospital is a bit crazy today, it's changeover day and there's a lot of new faces around. It's not a problem for me but the new doctors on the wards are rushed off their feet. I turned up here just after nine and almost straight away had my line put in, but I'm still waiting for my immunoglobulin to turn up..I'm sure it's around here somewhere and everyone is too busy to get it.

I come in every five weeks now, that is five weeks at home and one week in here. I'm a lot stronger now and have hardly any drop off in power or co-ordination. It's not that long ago that I used to have to use my wheelchair to get in here for my treatment. I can walk a good distance now before my legs start giving in and on a good day I can run a bit, but that really does wreck me so I avoid it as much as I can. I can cycle quite a bit better now but not at any kind of pace, it's great to get out and get some air in my lungs.

When I think back on where I was last year and the year before I reckon I could put all this down as a life changing experience. It's certainly changed my perspective on things and what I've figured out is to live life and get out and meet people, visit places, have fun, go and see the things that you've always talked about seeing, and most of all don't get trapped inside the same four walls...there's a whole world out there and we don't get a second chance.

Morning has broken

And so turns another day, and it's not starting for me as I'd like but there's not a lot I can do about it. All last night I spent awake and gave up trying to sleep at half six. I'm fairly used to getting not a lot of sleep but I hate getting none, and I'm sure I'm not alone. What's going to happen during the day as I go about my usual things is I'll suddenly need to sleep and I'll lie down and sleep like a pup for a couple of hours. The knock on effect of this is that I won't sleep tonight either and the vicious cycle begins. I could go days and days like this or I could figure out some way of breaking the cycle early. I need to get through today with enough rest and be jaded enough tonight to sleep.

I'm sure the doctor could give me something to help me sleep but I take enough meds as it is and any more would just confuse me, and I could do without being confused any more than I am. I don't like taking heaps of meds, I've heard to many nightmare stories of kidney and liver failure in later life from people who ate tablets like sweets and when I die I want to be in the best of health.

The other option is to get blind drunk but as I don't drink then this option is also gone out the door, and I don't use drugs so I can't get stoned. I'm not likely to get in a punch up (although I'd never totally discount it) so I can't get knocked out. I could of course watch The English Patient, that'd put me to sleep any time, but I can't be bothered to go to the DVD store.

There's the notion of course that reading could send someone to sleep but not me, when I start to read anything I go into a world of my own and I have to finish what the writer has written, and the furthest thing from my mind would be sleeping. If someone has gone to the trouble of writing something interesting enough to have me start reading it then the least I can do is finish it. I can sit and critisise the writer to my hearts content and not even leave the room. I can also gasp at the writers ability to turn words into dreams. That's the great thing about books, it open doors to great minds and ideas that entertain us and challenge us and make us stand up and think. I've had lots of debates with writers, some of them have been dead a long time, but that shouldn't stop a good debate. I think I might wander down to the library or a bookshop and see if I can find a little gem to keep me entertained for the day.

Tonight I'm off to a birthday party in Limerick so I'll have to rest all day so I'll be able to go. No sleep mixed with C.I.D.P. is really going to wreck me but I'll power through with the help of a good book, or even a bad one, and I'll be the better for it tomorrow.

Hi gang

I know it's been a while but there's a good reason for tthat, nothing has changed much. I started this little blog to let people know what it's like for me to live with C.I.D.P. and for now it's just the same day in day out. I don't mean that in a way that my life is boring or anything, exactly the opposite, I have a ball every day. I mess around online, I play my guitar, I cook, I cook some more, and if there's any internet hounds out there you'll know I've started a little business, it's still very much at the green shoots stage but I'm giving something a go. Walking a distance is still a bit of a problem for me but I get by, and I have a car anytime I have to go anywhere.

I've never sat and thought about what to write, I just sit and type but when I've really had nothing to report I didn't see any point. Fishing stories are for another type of blog and if anybody wants to know about any of my new recepies they can message me or ring me or wharever. My music is another story. I'm back playing an odd gig here and there and that's all good, next week I'll be in Ennis to hear and play some traditional Irish music. It's good to be able to do all of these things and the reason I can is because the people around me didn't stop caring, my wife, my daughter, my parents and my countless friends (you know who you are). It's because of these people that I'm able to cope with this thing that I got and that's why I have nothing really to report. I'll still blog away every now and then but for now thank you all for giving me nothing to write.....xx

It's later that I'd like

Sometimes I want a good night's sleep. That might be really obvious to a lot of people but for me it's different. My whole body twitches sometimes all night and on nights like tonight I just can't sleep because of it. Tonight I'm really tired and I could do with drifting off into lala land for eight hours but my CIDP says no.

I'm pretty used to this by now and I've learned to catnap during the day when I need to, and I do try to do as much as possible to wear myself out everyday so by the time midnight comes around I'm so tired nothing would keep me awake. The thing about tonight is that I spent the evening playing music in a local pub and now I'm buzzing from it. Most musicians will tell you the same thing, it's hard to switch off after a show and winding down is always a problem, so combine that with twitching nerves and muscle cramps then I don't really stand a chance.

Lately I've been doing pretty well. My walking is getting better in the middle of the month and I haven't needed my wheelchair in ages, so long in fact that I'd have to check back on several social network sites to give an exact date and I'm far too tired to do that. I wish I had some dramatic tale to tell but I havn't. Having CIDP and living with it for me is all about having a routine and doing the same things day in day out so everything is measured. This isn't such a drag really, it'd be a lot worse if I set off to do something alone and found out half wat through that I run out of steam and end up stranded, so I stick with what I know and leave anything new I want to do for a time when there's someone around to rescue me if I do break down. I've managed to go on a few bike rides recently and when I come out of hospital next week I plan on doing a whole lot more. It's one of the things that I thought I might not be able to do again but I can and will. I guess that's what keeps me going, all the things that I used to do that I thought might be too much for me have become daily chalanges for me. When I decide I'm going to do something I have to work out how I'm going to do it and if I fail, what are the consequences.

I don't know if any of that makes sense to anyone but it all works for me. It's half three in the morning and I'm still wide awake but really tired and I may be rambling a little bit.

My next big target is to be able to cycle to the river with my fishing gear, spend some time there and cycle home. I'll be testing that one on the 16th of August. I might crash and burn or, if I do my homework and stay a bit focused, I might complete it and then it'll be another thing that's measured and it will become part of my routine. When that happens I'll find a new challenge and so on untill I can do all the things I want to do or know for sure that it's beyond my ability. Some people have warned me that I'm setting myself up for failure because I'll only stop trying when I totally fail, but I'm not going to wrap myself in cotton wool and hide away and if I crash and burn while trying to do something then so be it, as I always say "a bit of pain never hurt anyone".

Suffer for my art...??

I know I should be spending a bit more time on this blog but my typing isn't always up to scratch and it would take me ages to even write a little bit. I was in hospital last week after a good month on my feet, I don't think I was in my w/chair at all in fact but I couldn't be 100% on that, I think my memory is shot or maybe every day just blends into the next day and I'm never really sure where I am either way I had a good month and felt great. Last week when I went in I still felt pretty good and for the first time I walked into the hospital instead of using the chair, I felt a real sense of achievement.

My treatment went well as always, I'm one of the lucky ones, I know some people who have a real hard time with infusions. The team of doctors are all happy with me as well and might stretch my time out of hospital from four weeks to five.It'll be good to spend more time at home.When I came out though I felt awfull for a few days, I don't know why but I just did.

As most of you know (or maybe you don't) I love playing my guitar and singing and I want to do a whole lot more of it. I recently went to see my old buddy Frank Turner and it reminded me of why I love live music so much. The whole room was full of energy and fun. Everybody sang together and danced together and there wasn't a cross word all night. Another thing I noticed was that there wasn't a single person there drunk. I've often said that about live music, it really isn't the home of a drunkard. But I digress....

I want to start playing some gigs again so I need to be 'gigfit' to do that and the best way to do that is to spend as much time on my feet as possible and this isn't always as easy as I would like. The thing is that the more time I spend on my feet the fitter I get but also the more time I spend on my feet the more pain I'm in the next day and the day after that. It's a bit of a mathematical nightmare.

I've been spending a day a week in Cork City. The city centre is flat and there are some great coffee shops to drop into to have a rest, and I like coffee, see it all fits. I was there yesterday and decided to wander out past the Mardyke as far as Wellington bridge, it's only about a mile and took me just over two hours, it was my Everest for this week (everyone should have an Everest every week, even if it's only a speedbump) It was a nice walk, when you have to walk slowly you get to see an awfull lot of things that you'd normally miss. My lift picked me up just by the bridge and I felt great. Last might I didn't feel so good and couldn't sleep because of the pain and twinges and twitches, so today I'm in pain all over and feel like I've been living in a skip for the past week.

I have to stay active or I'll crack up and if that means I get a few sleepless nights then so be it. I want to be able to spend a few hours with my guitar and a bunch of friends and play some music and the only way I can do that is by getting some way fit. I'm sure it'll all be worth it in the end, if not at least I'll have lost a little weight.

It's far too late for all this

I really should be in bed but I'm on the couch typing a blog at two in the morning. I've always said that I refuse to complain or grouse about my condition and that hasn't changed, I just want people to know how it creeps up on me when I least expect it.

The other day I went fishing, I go as often as I can because it's not far to the bank of the river and once I'm in the river, wearing chest waders, I find I can walk really well because of the bouyancy. Normally the day after my legs feel better and I can get around a bit better, but not any farther. The other day was no different right up until I had to walk back to the car, I thought it would be the same as always but I was wrong. Every step I took I thought would be my last, every ten yards I had to stop and rest, this was more difficult because feilds aren't level. When I got back to the car, which was parked only fifty yards from the river, I was really on my last legs.

This is what happens every month, I think I'm doing well and my walking gets better and all of a sudden it's all gone and I'm back to square one. This is why I can't sleep now, because my whole body is twitching and spasming and cramping and I know I'm well on the way down.

Now normally I'm a fairly happy sort of a person but all of these things really get me down, not in a 'oh my god I can't cope' way, more of a mental fatigue kind of way , where it's almost too much trouble to think. Even right now I'm finding it really hard to concentrte on what I'm doing right now, my eyes are heavy and my limbs are sore, I feel hungry all the time even though I eat like a horse. I seem to get abdominal pains for no aparent reason, so no matter what way I lie down I can't get comfy.

I feel like I'm blathering on about nothing but right now I'm really tired and keep losing my train of thought. There are some things that are harder to get used to than others and right now I can't remember wheather or not I felt like this last month, but I reckon I must have. I really should re-read my blog sometime and see if I can timeline these things.