I am painfully aware that nobody wants to read a drag-fest every day. After my last couple of weeks of blogging about my lumber puncture hell I feel like I should be coming to you today with a sunny disposition. In my little disclaimer at the top I have made the promise to always be honest and today I am not feeling at all sunny, in fact, there is a storm brewing. So I can't bring you happy Karen today but like I tell my kids "you don't always get what you want in life so get over it". Wow, actually that sounds a bit harsh when written down, need to brush up on my motivational parenting skills I think.
I am feeling really fed up today. I am so exhausted and my legs are being a pain in the ass, well actually they are being a pain in the legs. They started aching yesterday as I shopped for groceries, you know, that dull but intense "growing pains" type ache some of you might have had as children. As I pushed my trolley out to the car I felt like I was walking through porridge. Every step was an effort and even though my head was clear and I was feeling positive in myself, I was being betrayed by my lower limbs. Sodding legs, if they aren't tingling, zapping me with electricity or going numb they act like spoiled children not wanting to walk.
By the time I went to bed I felt like I had run a marathon. Phil was telling me how achy his legs were feeling from playing football on Sunday and his run that day and although I didn't say anthying I was secretly envying him. At least he had a reason for his legs hurting, my legs haven't seen exercise for months and yet the pains and heaviness in them made me feel like I had been giving them a beasting at the gym for hours.
I fell asleep with no problem but woke up at 2am with such throbbing in them. Somebody had once again filled my legs with wet sand (or cement) as I slept because they felt like they weighed a bloody ton. I lay there feeling miserable in the darkness resisting the urge to pick up my iPhone but after a while I was so bored and fed up I gave in and checked out my Facebook and Twitter feeds. The good thing about having friends all around the world is that I can usually find someone to chat to and so I was able to pass some time talking to friends online.
After about an hour I put my phone down and eventually after what felt like ages of tossing and turning I drifted back off.
I am exhausted this morning, my throbbing, heavy legs are still with me and I feel really fed up. I am having one of those FUMS days. Can I technically say that now? Can I say FUMS or should I say FUPMS? Does it matter? I don't even care today what is causing the pain, I just wish it would stop.
I know that really I need to address my lifestyle, change my diet, maybe cut back on the wine (note I only said maybe!) but I feel really resentful. I have a friend who is tackling his MS head on and trying to control it with diet and exercise. I mean, the man has even given up bacon (now THAT is commitment)! I think that maybe I have a bit of a self-destructive personality because I am not willing to make these changes (yet) although I think it is more a case of "screw you whatever bloody illness you are, why should I give even more of my life to you?"
I think I will go and jump in the shower (try not to lose my balance and cut myself while shaving today) and see if I can shake off this mood. Nobody loves a Donny Downer.
So enough about me, how are YOU?
love you anyway, up or down, thats what friends do XXOO
ReplyDeleteMy recent thoughts:
ReplyDeleteSent: 12/21/2011
Subject: The Elephant In The Room
I've come to realise that one of the reasons I write this newsletter is because I believe that a busy online persona is the perfect cover for someone who spends his life in a wheelchair. I live in enough denial about my condition that I think that a carefully woven digital alter ego can fool most of the people most of the time.
There, I've said it: I'm in a wheelchair. The elephant in the room. It was actually quite insulting of me to hide the fact by omission because I thought it better to spare you the facts. How patronising of me. lt's not as if most of you didn't already know having seen me at toy fairs or heard it through the grapevine, as if anyone would bother talking about me. You've got better things to do.
Actually, having to use a wheelchair is not all bad news. Just look at this package of user-friendly benefits:
- Watford FC season ticket for me and a helper: a magnificent value-for-money £88.
- Blue badge qualification: allows you to park on all forms of yellow line anywhere, anytime.
- Discounted tickets for two to most concerts and events.
- Never any need to search for a seat.
Of course, there are downsides, too, not least the staggering cost of equipment to make life more comfortable. This past year alone, we have spent around £20,000 on everything from the wheelchair itself to an en suite wet room. You would have thought that more financial assistance kicked in when the unwelcome and unexpected specter of disability came-a-calling. The answer is NO unless you are bean-less and don't own a house. We're not exactly rolling in cash but it takes the one of you who is able to work full time and who has a decent job like Annie to negate all qualification.
By way of example, we were having to use a hefty metal ramp that Annie would have to erect every time I wanted to leave the house. It really was a pain in the arse so we got a quote for a concrete ramp to be built. The regs are that you have to extend outwards by 1ft per inch of drop and we have a 9 inch drop from the double doors out onto our patio, so a 9ft ramp was necessary. Oh, and over £3,000 which was to be funded by, err, us - just to get out of the bloody house. The same couldn't be done out of the front door because the ramp would reach into the street.
Thank goodness Annie and me can see the funny side of things. We once went on a short break to a hotel in Gloucestershire and found the grounds had loads of gravel paths, which were impossible to traverse by wheelchair. We might as well have been trying to walk through a tar pit. To this day, we use the gravel path analogy to describe anything difficult. And the part of kerbside that is dropped to permit easy passage for the wheelchair also usually has pimpled concrete to tell the blind that they are near the road. Crossing the raised pimples in a wheelchair compromises the perineum as you ricochet repeatedly over them: ouch, ouch, ouch. Bloody blind bastards, we say. They are so selfish.
I've always joked that, I might be disabled, but at least I wasn't born ugly. The sick part of that joke is that, in my inherent arrogance, which will be my downfall one of these days, I actually believe that. The world is divided into two types of cripple: the weird ones on the one hand - that's all of them - and me.
Jeez, I am so going to atheists hell.
Karen...I'm sorry you are having such a crappy day. I had mine yesterday. Totally exhausted, hurting all over and sick in the stomache...couldn't win no matter what I did, so yesterday..I gave in and spent most of the day in bed! Have to give in somedays, even though I hate it. I don't know about anyone else, but it seems to me I have an every-other day affliction. Granted, EVERYDAY there is something, to some degree wrong, BUT it still seems to me that every-other day is worse. Maybe it's because on the "good" days I do alot more than I do on the "bad" days??? BUT, what choice do we have? I always figure I better take advantage of the good energy I have while I have it. I think that's part of MS....our energy cells DO NOT STORE energy...we simply use it as it comes. (?) Guessing game, as usual, LOL! Anyhow, I hope you get to feeling better and I will say it also.....FUMS!!!!! Take care!
ReplyDeleteSherri
Hi Karen,
ReplyDeleteThese bad days can be totally awful! But I thought of you yesterday, when I was reading about nerves, mimics and that kind of stuff. Because there was a info of what the alchohol does to us: it is TOXIC for the braintissue and causes a swelling in it! So I do think that you should take a brake from wine, if you want to feel better. This is no joke..
Sirry