New Wheels

My wheelchair arrived yesterday and was quickly assembled and admired (although it may need a trip to the lovely Naomi at Pink Sky to make it a little less black...) so all that remained (in the midst of a stomach bug) was an outing!

Well the first thing I noticed was that the pavements around here are no supermarket! I can quite happily zip around Asda for an hour (occasionally being forced to stop suddenly-not fun when you hands are the breaks-to let through the ruder people in life) but a half hour excursion in the wheelchair was another matter altogether!

After a rocky (litterally, parts of the pavement are so bad my wheels were leaving the floor forcing me to rock my way over) 15 minute roll I retreated without reaching my target of the bus stop. I estimate that from my starting point the bus stop and back it is roughly 200yards or 183metres and I was roughly 60 yards short leaving me with a somewhat underwhelming 128metres travelled. Anyway I arrived back home breathless and completely knackered and collapsed on the sofa secretly pledging never to do such a stupid thing again!

Trip two-yep I tried again!-went a little better, having got the feel of things yesterday I knew a little more how to handle the (literal) bumps in the road and I actually got going a little bit and needed a few less rests. i arrived back after 30 minutes (again) having managed the extra 60 yards to the bus stop and back completing my 183m target! In addition I got home and climbed the stairs to get the post before sitting down rather than collapsing!

So what have I learnt from this experience?

1. The Paralympians really are superhuman! the 30minute 200m race would not be popular!
2. When you put plasters on your blisters they find a way to reappear a little higher up
3. When you see a wheelchair user with the handles folded down on their wheelchair it isn't because they don't want help (well not totally) it's because in order to go uphill you have to lean back further than the seat will allow when folded up.
4. Make sure Mooku-my housemates cat-is in the house otherwise he will help you home by zig-zagging in front of you as you make the uphill trek to the driveway.
5. Sometimes, if the hill is really steep (or mildly steep like my driveway) you just have to go backwards or you will waste all your energy trying not to slide backwards-thing how easy it is to pull someting to you rather than push it away, that's how a wheel chair works.
6. Hands do not make goo breaks! Bring on the calluses, these blisters hurt!
7. Don't go home and tell the Tahora-my cat-how it was because she will register that you are talking to her and forget that her tongue is sticking out making your efforts seem somehow amusing (as I'm sure they are to a cat!)

Squashed by the Black Dog

I guess I have been avoiding this post for about a month and a half now because if I didn’t admit it then it wouldn’t be true. I guess I shouldn’t be so surprised and disappointed in myself because it is something that was always supposed to catch up with me eventually due to the long term use of pain killers that reduce serotonin levels and in a way it still isn’t happening how it should because my brain isn’t the cause, my thyroid is.

Firstly I think I should apologise to the family and friends who I have been too ashamed to talk to, logically I know that I shouldn’t feel ashamed, deficient or defective but that is how I feel.

I have now been off work for fourteen months, I am in constant pain and I’m tired-not long day, been for a hike, worked hard or even done too little tired, it’s a bizarre, bone deep fatigue that never really goes away even on the rare occasion that I sleep well several nights in a row. I generally spend ten to twelve hours in bed in order to get four to six hours sleep. This fatigue is something that has never been a problem before, I have often spent months at a time living on four to six hours sleep with no problem, the thing that makes it so hard is the constant waking during the night, for every hour I sleep there is second hour that I spend trying to get the pain back under control and get back to sleep (something not helped by the neighbours from hell upstairs-eviction day tomorrow, YAY).

In addition there is the reality of daily life when there is very little to do. To start with it is great to have time off but once you realise that everyone else is at work and even the godsend of maternity leave tails off there are only so many things left to do and basically all of them involve being alone. Then you have those wonderful days during the week when someone has time off and wants to do something. Instantly there is a solution to the boredom and loneliness until the reality catches up. ‘Let’s go to Bristol/Gloucester/London/Liverpool, we can do a little shopping and the disabled badges mean we can park close so it’ll be fine!’ Yeah, great idea! Oh wait, during this shopping are you going to want to browse because I’ve had to give that up, I browse online then make a beeline for what I need before fleeing because the effort of standing in a shop is too much. So basically there is the choice of going somewhere like a zoo where I can hire a scooter or Cheltenham. Oh but Rory doesn’t go in the car so I need to charge him in town because he won’t survive the ride there, back and around town...

Anyway you get the picture, there are a lot of limitations on what I can do, the main place I go is the gym-in general quite a solitary activity- and the pharmacy, aka my new friends! For about eleven out of the fourteen months I was frustrated but it wasn’t too bad, I felt positive generally (obviously there were some bad moments but I laughed at them eventually) but something has changed and I don’t like it!

Today I went to the doctors, going in I knew there were several things to talk about including the fact that the two non painkillers that alter your brains reception to pain were not working correctly-I will be coming off them over the next 6 weeks to go onto something else but in the meantime my pain will gradually increase as they decrease-the fact that my thyroid is underactive and I had a whole list of symptoms which apparently are attributed to hypothyroidism. The result is that my doctor agrees that I am depressed, something I think he suspected after the last time I saw him a couple of weeks ago, and that the chances are my thyroid is on its way to ‘failing’ but in order to be sure I have to wait 6 weeks for another blood test to fully confirm. For those of you paying attention this means that the next 6 weeks are going to be rather interesting as my thyroid symptoms are likely to increase as my pain drugs decrease.

In the past I have understood the concept of depression and how it works but the reality is a bitch! This isn’t new, I always knew it was but its different to understand the concept and to experience the feelings. In addition (and I have been reliably informed that I’m being silly) the fact that there isn’t actually anything wrong with my brain chemistry-just my hormones- I feel like a fraud admitting that everything isn’t great and positive.

I guess at this point I am wondering what the point is, I do physio and go to the gym for rehab and to help protect against future dislocations but things are getting worse so quickly I have no hope of catching up let alone getting back to the point where I am ahead of the deterioration. There is nothing much I can do and no one really to see and even when there are people or something to do there are so many restrictions on what I can do I end up not wanting to put people out and just staying at home wondering if I would have bothered getting out of bed if I didn’t have a housemate coming home who would be worried if I hadn’t.

So my solution? Buy a wheelchair! Basically I am stuck in a catch 22 situation, it is very hard to go out and do something because I generally need someone with me and then I feel like I am holding them back with my limitations. In addition I find that at the moment I really don’t feel like doing anything. My reasoning is that when you combine crutches, Rory, blue badge and a wheelchair there are fewer excuses to not do something. Hopefully this will work. In the meantime I need to try to figure out where my motivation and concentration have gone. I am currently reading what is almost certainly the best book of the year, but I can’t motivate to read it and when I do my concentration won’t last more than a couple of chapters.

Well, there it is, the black dog has finally caught up, many years after it was expected but it has run me down (not a hard feat, I barely remember having the ability to run). I sit here watching the Paralympics wondering if there is anything I could compete in but I have yet to see a single sport that wouldn’t stress my joints in an unacceptable way. So I guess I will work on pushing myself in my chair at a reasonable walking pace while exercising my quads ready to get back on my feet after surgery. All I need to do now is to try to keep getting up and starting to get more into my day than staring at the wall wondering if things will ever get better. Of course they will, it’ll just take time and possibly hormone therapy!

Sorry for the crappy post but I guess this is what my blog was for...