Sunday, 27 February 2011

use a stick when your spider-legs feel sick

So I'm now coming up for two months since the beginning of the current relapse, and things are still not back to normal. My legs are less uncomfortable now, but overall I would say they feel weak, wobbly and tired. When I wake up, and in the evenings, or when I've been over doing things, my legs start to feel tight (my "invisible stockings" go back on!), and sometimes they feel sick! - that's a tricky one to explain, but imagine the feeling you get in the pit of your stomach just before you're sick? well that's how it feels in my legs! Sometimes, when the invisible stockings have done their worst, my legs just want to curl up under me and it brings to mind how the legs of a dead spider curl up; but spider-legs don't give such an attractive and upbeat spin on things as invisible stockings, so 'll just leave that one right there!
I have recently bought myself a stick to help me keep my balance, as I continue to walk like a drunkard. It's quite odd. It feels a bit like coming out! Suddenly people are aware that something is going on with my legs, and it's led to many conversations..I don't mean to be churlish, I know it's cos they care, but sometimes I don't feel much like going over it again. But talking to people about it is better than getting the sad, sympathetic smile from people...that just pisses me off!
I think I'm getting my own head round things more now. I know that I resisted using a stick for too long because I was in denial about needing one, and it felt like a big thing to actually be seen using one. I think it was an important part of my acceptance of the MS. To recognise that my mobility is impaired and rather than seeing it as accepting defeat, seeing it as taking a positive approach to dealing with the challenges my body throws at me.
I am going to have a medicine holiday on Tuesday, for two days. I'm on prescription anti-spaz tabs which run out on Tuesday, but I next have a docs appointment on Thursday, so I'll go cold turkey for a couple of days to guage where my body is at when left to fend for will be interesting if only to see how effective the anti-spaz tabs actually are, as when I first went on them I had only been relapsed for a week and the full tidal wave hadn't really hit me yet.


Sunday, 13 February 2011

the feeling of feet

I think I've turned a corner of the relapse I've been experiencing in the last couple of days. My legs have started to come back a little here and there. Last night, however, I overdid it a bit. I went to the theatre, and lasted, only just, until the interval. My legs were so cramped up I could barely walk up the stairs to get out of the auditorium. That doesn't sound a whole lot better, I guess! I decided to not go back in for the second half. Though the play was good, I had really spent the best part of it hoping each scene was the last, and nearly crying with relief when the lights went up!
We were off to a friend's party after the play. The plan was to catch the bus and then walk the last kilometre to the house...what had I been thinking? By the time I escaped the theatre, the thought of a long walk in the cold and dark to find a house in a country lane that I'd never been to was daunting! Luckily, because I had left the theatre an hour early, I was just in time to catch a lift with a friend (with a small, but hugely appreciated detour to come and fetch us!) The rest of the night was lovely, but was spread over three floors which I found hugely knackering, so I didn't mingle as much as I might have done. But despite that, and the lack of alcohol due to the meds, I was still up chatting 'til about 7am!...I never expected to last that long!
I met a nice bloke who I thought was very inspiring. He only had one leg, and chose not to use a prosthetic limb. He said it slowed him down, especially at parties and outdoors etc, where the terrain is not flat. He was much more agile than me!, nimbly hopping over obstacles where I would need to clutch things/people to steady myself. He was telling me that, although it's been many years since he lost his leg, his body still occasionally forgets it's not there and causes him to fall after trying to use it. Well it struck me that I am labouring with the opposite conditions: I have perfectly working feet which I can't feel, and the irony wasn't lost on me of who was coping better!


Wednesday, 9 February 2011

belly dance therapy!

I am very excited about starting belly dancing again. I had a thought that belly dancing should be therapeutic for my condition right now, as well as a way to gently exercise my body and regain some degree of balance and body awareness. Well, I looked into it on the web, and it seems it's tried and tested and seems to work well...

..I do believe that we instinctively know what's best for us if we listen carefully to ourselves. I had decided to up my oily fish intake on a hunch, and have since read that omega 3 acids are an important part of an ms "sufferer's" diet. I use the quotation marks as I'm still deciding how I choose to define myself, but you can be assured, "sufferer" will not appear in the title! That is a decision we are all free to make. I am inspired and encouraged by the words of my elderly grandma who, on experiencing an odd spots-before-the-eyes episode, instead of worrying about her inevitable decline, merely remarked how interesting it was as it was an experience she had never had before!'ve got to love my nan!

Another website that I found had ms specific gifts, with exactly the teeshirt I said I needed whilst stumbling along a public place the other day...

Tuesday, 8 February 2011

don't look at the mountains!

It has now been 17 days since I had this relapse, plenty of time to get to grips with all the nuances of this bout's symptoms. So, for the record, I'll recap on the status quo with my short-circuited body: from the hips down I am numb, and tingly, but at the same time my skin is hypersensitive to temperature and direct touch. My feet feel like lead balloons, and about twice as big as they should be, and my bum feels twice the size it really is. I have been feeling quite emotional and tired too, but that could be the drugs.
Talking of the drugs..I went to see the GP to stamp my heavy feet and make a fuss about getting to see a neurologist/MS nurse (ended up bursting into tears in her office! - bloody girl that I am!). She was appalled that I had fallen through the net and said to leave it with her (a phrase that, in the NHS, I believe means they are about to file your notes in the bin!). She also prescribed me some kick-ass tablets to make my legs ache less ("Baclofen"). There are quite a few side effects stated on the leaflet, including tiredness, depression, hallucinations and, best of all, overexcitedness! I have no idea if I've had any of these, though I did have a strong urge a few days ago to run on the spot (overexcited?).
I wish I had recorded the last relapse in as much detail as this, it would have helped now to guage if this one is worse. I can hardly remember how it really was now, but I have a feeling this is a more severe relapse, but it might just be that the last relapse was during the university summer break, so I wasn't having to work through it.
The work thing is really taking it out of me this time, and I have had to turn down some jobs
(as a disability support worker) due to mobility issues (like not standing a chance of getting across campus in 10 minutes at the moment)! Sitting down for one or two hours at a time is also quite painful for my poor fuzzy bum. It crossed my mind for the first time recently that there may come a time that I will have to give the job up if my symptoms become more full-on than they are now. But it's not a thought to dwell on...
This is something I have resolved to do: I will not linger in the realm of "what may happen", the most positive way to deal with this is to take each day as it comes. That is quite enough to manage in one lump! I'm not sticking my head back into the sand; I am still educating myself about my disease, but I will not let the shadow of fear hang over me. It is a rocky enough path as it is without looking at the mountains on the horizon!
I am wondering if I might be starting to get a little better...I noticed a new sensation last night, the backs of my legs feel wet! They aren't wet (I have to keep checking!), but hopefully its a sign that my neurons are starting to reboot....we'll see!