Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t allow myself to simply climb back into bed, that is were I would be right now. I know a lot of people really don’t understand why I won’t give in and just go to bed if that is what my body needs, I have spoke before about the routine that is needed but it is also something else and that is maintaining normality. I really don’t want to turn my world up side down and sleep odd hours, I have a need to stay in line with the way my life has been for the majority of my life. The only time I changed it was due to work, when I was a DJ I worked mainly between 7pm and 3am, so I had to switch it but as soon as I gave up that life style I set my alarm for morning and that is were it has stayed. I have a need to still have some discipline in my life, to have set times to do things and for those time to be what I would call normal. I might have it totally wrong but I really think if I let my illness dictate how much time and when that time is to be awake, I would be finding everything harder and harder.

I suspect part of the reason I fight to stay awake is that I am very aware there will be a point when I won’t have the strength to actually fight it, and at that point I will have to give in. I think that I may push myself to do a lot of things for that reason, simply the awareness that one day the choice will be gone and there is a huge desire not to give into it before that time comes. I suspect there is also a large amount of wanting something to be NORMAL, I really hate that world but there is often no other that I can replace it with, yes I want things to be normal.

I have been very much forced over the last couple of weeks to admit that I am past the tip point, I think in many ways it has been harder to admit that than it was to admit I had hit the point where I needed a wheelchair. I had struggled for several years to get around on my own two legs and a walking stick. Where I worked was a standard call center, a long room that I couldn’t walk form one end to the other without having to stop and rest, if when I finished work I couldn’t get a taxi, I was stranded trying to stand until one became available, and I had turned myself in to almost housebound as I couldn’t entertain the idea of going any where due to pain and exhaustion. It is hard to admit you have to give up your legs for wheels but I can assure anyone that is facing that right now that they should stop fighting and just take it. It really changed my life, it was the most wonderful thing I had been given for years.

Admitting that you are now mentally not up to surviving everyday life is much harder, there is no gadget that can help me like my chair did, this is harder because the world can’t give me something to make up for what I have lost. Unlike being unable to walk when I just stop because my legs have had enough, I can’t stop my brain rest it and start again, it just doesn’t work that way. I can see already that as I have tried all the normal memory prompts and gizmo’s and I have gone past being helped by them, I am on my own in many ways. I thought about having someone coming into the house to help me with somethings but don’t need physical help I need a brain that works, someone being here would aggravate me as I wouldn’t feel able to do what I do when I want to. I would find having to talk a trial and I would fret about my home not being perfectly correct and tidy all the time. So I am stuck! As I said I am over the tipping point but still holding on with my fingernails to prevent a fast slide downwards. Without doubt this is the hardest thing I have come up against and it is going to take time, a lot of time to know how I get round or past this. How this will unfold only time will tell.

Peace is returning

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have done for a while, that to me means more than the decrease in the pain. I have lived with pain that long that I find I can get on with things to a point but when you are pulled down by it everything is a struggle, that small improvement means a lot! This morning is the first one for a while were I have sat here for 3 hours without a single tear insight. I haven’t been crying my eyes out it has just been a case of from nowhere a tear or to have appeared and at worst it has been my eyes filling once then clearing, but those tears spoke loudly to me. Although I have problems holding emotions in check they don’t normally run a muck when I am on my own, they are normally triggered by others as Adam knows all to well, but for me to be sitting in tears with nothing but me to trigger them, just wasn’t right.

I know things are still bad but I also now know that I am back in control of how I feel about it all and that is so important, probably more important than getting rid of the symptoms. When you can’t see past where you are and see nothing but a downwards slope it is really tough to handle, I accepted long ago what lies a head of me but rightly or wrongly I had a vision of it being a slow gentle slope, not falling off cliffs all the time. Yes I am in a flare and it isn’t over, but having that tiny improvement makes me feel that the free fall aspect has if not stopped at least slowed and it has given me back enough to allow me to be comfortable with where I am just now.

I’m not sure how to explain the feeling as it isn’t something I ever felt before I had MS but the closest I can get to it was when I had ‘Glandular Fever’. If you have had it, you will know that it is an illness that also drains you and leaves you wondering if it is ever going to be over. I have a memory of being in bed for weeks, with no strength and no energy, just sleeping and sleeping. My mother said I rarely woke for the best part of a week and I still remember when I did get up eventually, that just going to the toilet and back left me zonked. I was only about 11 but I was so scared that I was never going to get better, that my body was never going to stop hurting and that I was never going to be able to go back to school. The last one was the only high point in it, but that physical drain also drained me mentally, I didn’t have the strength to hold a conversation or to be part of the world. Then like now it is that last bit that is the worst of all, the fear that you are loosing the world. I do sometimes wonder if that long term illness was a training ground if you like, I was ill for the best part of 2 months and I wasn’t allowed when I went back to school to take part in anything energetic for another 3 months. I learned then that you might fear you are dieing and that life is never going to be the same if you do live, but the truth is, life goes on and it might not be the same but it isn’t that bad either.

Being out of control and lost to the world in my head is more debilitating than the physical restrictions, loose the battle in your mind and you have lost everything, win the battle in your mind and the physical doesn’t matter so much. I am in no less pain really when I look at the all over levels but I am winning in my head and that changes everything. My world is becoming peaceful again.

I am

There is a strong desire today to not write, to simply post “I feel crap and I am going to bed”, but that isn’t what this is about, is it. To stay true I have to post daily, but there is no rule about length.

Just as I published yesterday’s post the MS Nurse arrived, she was here for about 45mins and she confirmed my thinking, I am either in a flare or everything has moved up a gear and I am once again on a faster slope, only time will tell and I am sticking on the positive side, this is a flare. We went thorough everything that has happened since Christmas and then the point a several weeks ago when I started going down. I have tried to pinpoint when it started snowballing and the first signs are right back at the point I had the nurses in and out of the house and them the Dr here, all things that upset my routine. As you all know I have been grumbling on here about the pain in my pelvic and legs, since then. Add in the mad pain in my back that didn’t fit to pulling a muscle, which like everyone else I had done before, the pains never matched and took too long to die down. I also spoke to her about the tightening of the tendons in the backs of my legs and how my left foot has dropped and the continual spasms that lock them up at times. She is going to talk to my GP and sort out a new spasm drug as clearly I need it, but that isn’t the major outcome, I have agreed to go to the new pain clinic at the Victoria hospital.

My GP had suggested it months ago but I wasn’t keen to go for several reasons, first being the getting there and back, but as unpleasant as it was in the stair climber, I know I can do it, so first one gone. The second problem is my image of what happens at a pain clinic and what I learned about them years ago. My knowledge came from a friend of mine who went there for several months for treatments and training in relaxation, I know how to do that and it helps a little at times and I don’t want to have to keep going back and forward wasting time for nothing, well it was for her nothing as the pain was worse not better when she stopped going. I have no faith or belief in acupuncture, psychologist, hypnosis or any of that stuff. I have tried things like tens and so on and none of those type things worked for me either. Sorry but I really am the type of person who has faith in one thing and one thing only drugs, there is a drug out there I am sure that will control my pain and bring it down again to a livable level. I will see when I get there I suppose but I am still not really convinced there is anything they can do. I was totally open with the nurse and she said that the image I have of pain clinics isn’t totally accurate. Yes they do do most of what I knew, but they also have access and better knowledge of drugs that could help me that my GP wouldn’t prescribe without a Consultant behind it, so on that basis I have agreed to go, the first person to mention anything else will be shot. I just don’t have that energy required for all that faffing about, and disrupting my routine making life harder not better. So the clock has started on that waiting point.

All that out of the way, today, as I said at the top I feel totally wiped and lacking in effort or effect, this has just taken over an hour to write and it is far from my best, I know that, but when you are fighting through brain fog, body concrete and pain through every movement, what do I expect. My desire to hibernate is growing daily, I would love to just escape right now as purpose is hard to find when you feel like this, I am sometimes reluctant to say on here things like the above as to some it may sound like I am ready to give up, I am far from that, but right now my body wants to coast and doesn’t seem to mind what that actually means. I find myself numbed to emotions, not meaning to sound down nor feeling it, time and everything else is just passing by me and over me and I go on. I could be anywhere as I am not effected by what is around me, I am, is all I can say about me. I am in pain, I am lost, I am drifting, I am silent inside, I am tired, I am sitting, I am numb, I am still ALIVE and strangely with all that I am STILL HAPPY. And now I am going to have a sleep.