Charting The Progression Of My MS.

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

As soon as I woke up I felt the full range of MS sensations, it felt like small electric shocks were happening up and down my body.

While this was happening it also felt like I was on fire, at the same time my arms tightly folded against my torso and my legs were having spasms.

not a pleasant way to wake up but this is what happens just about every day, so while the sensations are still very strange, they have become very familiar.

It is weird feeling these things every day what is even stranger is witnessing the progression of my MS.

Horrible to see how far it has got, sometimes it makes me feel like I'm being squeezed like a tube of toothpaste.

Gradually my body is becoming more paralysed and less able to function.

It is strange to be keeping a log of this happening to me, all I can do is write about how I feel and think about what is happening to me right now.

Happy To Regain Some Independence.

 
Promise Land.
Rafael Y. Herman
http://en.wikipedia.org/wiki/Rafael_Y._Herman
 

I woke suddenly this morning feeling really bad, my arms were totally stiff & painfully cramped.

Despite the airco being on I felt like I was lying in warm treacle, which felt horrible, the mosquito net only intensified this.

I asked Richie when he took the net away from my bed, if he also felt as hot as I did, he did not.

 It was only me that felt hot, very hot and uncomfortable, somehow after Richie removed the mosquito net and repositioned me in bed I managed to doze for a couple of hours.

I concluded that it was the MS that woke me up so suddenly, my body seemed on fire, felt an unpleasant tingling feeling from my toes to my head.

MS sensations like something burning hot crawling over my whole body, my skin felt on fire.

Now that I am sat up, propped by the support cushion, my leg exercises done by Richie and I have taken my baclofen tablets I feel better.

The tingly, burning feeling has subsided, which is good, hopefully it will not dominate again today.

Paul from RTD Het Dorp came by to fix the Home Servant; this allows me to switch on radio, TV, lights, open the front door, good it works, happy to regain some independence.

A Special Time.

 
Joie de Vivre.

Susan Vrotsos.
Abstract expressionist artist from Winchester, MA, USA.

Difficult to describe all the sensations that I have been experiencing moving around my body just recently.

Feels like my body is burning up, other times everything tenses up so much that I get stuck in one position.

Feels liked my skin is being stretched to its limit, almost feels sometimes as if my skin were being pulled off.

Still have the  tingly electric shocks and my arms are very stiff,  heavy and clumsy and painful, feels often as if I am being hit with a heavy hammer up and down my arms

Last night lay here trying to sleep feeling like my wrists were being smashed until they felt broken and my arms hit repeatedly.

Added to that the feeling of electric shocks and the burning sensation made it very difficult to drift off.

 Have to be careful when yawning or coughing, then my body goes totally rigid and often can’t stretch my arms out afterwards without Richie giving my arms a massage.

So that he can gently stretch my arms out while holding my fingers to stop them clenching into fists and digging my finger nails into the palms of my hand and massaging the top of my arms.

Try to ignore all the sensations but that is very difficult to do, as they have become so intense, though sometimes it helps to put things into perspective.

They are all real feelings and sensations caused by the nerves not being able to transmit properly, not too much comfort when the pain of it all becomes too intense.

Although it does help my mind to think it is just the jumbled, jangled MS sensations and not reality, but it still hurts all the same.

Weird though to have so many painful feelings that are not really real just sensations triggered by garbled nerve messages.

Now that my hands and arms are no longer functioning well I have become more aware of my MS moving to another level.

Hope that I will be able to cope with all the things this MS is throwing at me, guess at some point I won’t be able to blog anymore, hope that does not happen for sometime yet.

Despite all the pain, discomfort, anxiety, and panic this is a special time, blogging has helped me enormously, being able to write about what is happening to me is important.

Meeting so many lovely supportive people and becoming friends has helped me stay strong and sharing this time with my darling Richie is very special for both of us.

Enjoying All The Moments.

 

Aleksander Gikerymiski.

http://en.wikipedia.org/wiki/Aleksander_Gierymski

Slept quite quickly and soundly until early this morning when I woke up very suddenly feeling hot, like my entire body was on fire.

An unpleasant sensation which I thought at first might be the catheter coming out or changing position, until I realised the feeling was moving around my body.

Did not feel that there had been or there was any catheter movement at all so decided it was ‘just’ the MS.

Putting my arms outside the duvet soon stopped me feeling so hot, luckily that happened pretty fast and I cooled down enough for me to wrestle my arms quickly  back under the duvet.

It did not stop the feeling of flames flickering over my body, but I just decided to ignore this especially as there was nothing I can do about it.  

Lay here thinking about tomorrow and my first hospital appointment, felt myself getting all worked up and upset.

Stopped that at once, said to myself that there was no point in getting upset as it was going to happen whatever I did.

Getting worked up would only upset me and make things difficult, when what I need to do is make things easier.

Deciding to stop being upset was very good, typical of me, always do this get upset and worried until right before the moment itself when I just accept reality and get on with it.                                  

No point fighting something that I need now in order to make my life less stressful, life is too short to waste it.

Not when I want to be here and now, enjoying all the moments that I can and I will.