I Am A Strong Woman.

 

George Grie.

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

Today I phoned and made an appointment with Ruud, from Summit for next Monday at noon to make a new adapted wheelchair seat for me.

I need a new one now, as I can no longer sit for long, sometimes it’s only 5 minutes before asking Richie to move me and at times its even less.

In the last two years my spine has become bent, nearly two years of being in bed meant that my muscles are now totally dysfunctional.

Spending so much time in bed has I am sure caused a general deterioration of everything not just my muscles.

I feel that my condition has got worse as a result, a real shame that my ex case manager was not attentive when I told her so often that the electric wheelchair did not give me any support.

The result of her inaction was a quick series of small pressure sores that healed quickly, and then on 21 August 2008, a very deep pressure sore suddenly opened.

 This was not properly healed until 6 August 2010, two years later, in 2010 I did spend some days in my wheelchair only to have to return to bed for weeks.

On 10th January after a 3 weeks sitting, I had to go back to bed until May, then I had 5 days sitting and back to bed until end of June, this happened twice more in July as well as in the beginning of August.

I am amazed now that I had to spend so much time in bed and I coped so well, I guess I have finally accepted that I am a strong woman.

Will Do Whatever It Takes.

 
Snapshot of me in August, 2008

Strange day today, dark dull rainy day outside had to put the light on this morning at 10.00 that is how dark it was.

Slept well just not long enough, it was only just light when I woke up and sadly could not fall asleep again, no matter how many pleasant fantasies I had.

Could not achieve the bliss of a couple more hours sleep, did have some great fantasies like floating down a river in a rowing boat with Richie.

Being in a light house looking out at a wild sea and watching the light beam from the light playing over the water.

Lovely fantasies but no sleep not even for a second, hate that every time I am nearly relaxed my arm muscles contract and I find that my arms try to fold over my breasts.

Then I have to work hard to unclasp my arms, straighten my fingers and get my arms down by my side.

By which time I am totally wide awake and the whole cycle repeats, I relax and my arms do the same painful thing, my legs also start to have almost gentle vibrating spasms.

In the end just lay in bed trying to relax and enjoy being on a beach in Trinidad which was pleasant.

My arms were so painful and stiff that it took me ages to get them out from under the duvet, hurt like hell, eventually it worked.

Once Richie helped me to straighten my right arm I could hold on to the handle above my bed and start my arm exercises.

My arms are getting incredibly painful, especially notice this when I am outside these days, this means that I have to work hard to get anywhere.

Had not thought that my arms would be like this certainly not now but guess as with everything with this shitty disease I will have to accept and deal with it the best I that can.   

And I will, have already started by speaking to Johanneke about other ways of steering the chair, good to get action now as these things take months here and I do not want to be stuck indoors.

Will do whatever it takes to keep mobile and keep happy.

                       

Saturday Reflections and Gladys Knight.

Feeling alot more pain since the weather has got colder, have started to wear gloves during the day, as my hands are so cold.

A good friend Anja sent me some gloves without fingers, basically they are a tube which has a slit, for the thumb and they are long, they go half way up my forearm.

They are soft, cuddly angora and stretchy material; I think polyimide, white with black zebra stripes, looks very nice.

Keep my hands warm; which is very nice indeed, as my hands are always cold, the only time they are not cold is when it was well over 25 degrees.

Gloves with fingers are very difficult for me to wear, as it is such a huge struggle to get my fingers to do what you want.

As soon as they have to go into the glove they splay out and the fingers end up sticking out in all directions which make it very difficult to put the gloves on.

It always added at least 10 minutes on our journeys, so we always had to start our preparations earlier if we wanted to get somewhere by a specific time.

Read on Chekoala’s blog about a new drug which is also for people with PPMS, like myself, was very interested to read about this, especially as there are no drugs for PPMS people.

It is very interesting that work has been done researching and testing and now putting this new drug through a trial period.

Be extremely interested to hear if anyone has already heard of this new trial.

http://multiplesclerosisprincess.blogspot.com/2009/10/successful-phase-iii-trials-for-new.html

Almost feel to volunteer to be a guinea pig, not sure that I would have anything to lose by being a guinea pig as the way it is going I am gradually getting less able to do things with my hands and my arms are getting very stiff and painful.

I am having a horrible time with increased pain and difficulty to sit comfortably in bed; I know that is all down to my muscles becoming weakened by being in bed so very long.

Finding it difficult to notice and feel how bad my hands and arms are becoming, it is not lack of strength, as I have built up quite a lot of muscle in my arms.

Can see the muscles and can feel the strength, but it is not a matter of muscles, it is lack of flexibility and motor functions.

Have more than enough strength yet find moving the mouse to be a huge challenge because I can’t direct it properly so end up clicking on things many times before reaching my target.

Hopefully before doing anything I may regret like deleting my text or reformatting the hard disk or any other unforeseen and unintended action.

Yesterday morning I woke up crying loudly, sobbing in frustrated rage at being so immobilised.

It is not that I forget that I am paralysed, could not forget that, it is just that every now and then I get a huge wave of anguish and pain about my predicament.

Unbelievably frustrating to be lying here totally incapable of doing anything independently can not even pick up a book or read a letter or do anything for myself.

Can’t open an envelope or turn pages, realise now that despite keeping optimistic and enjoying the moment, that underneath I have been and am deeply frustrated and if I dwell on it even briefly I am shocked how much potential there is for depression.

I think keeping in the here and now has saved me from being extremely depressed, but can feel that it is always right there.

The abyss of a deep depression looms large and it involves skill in not plunging right down the chasm between optimism and depression.

It is a balancing act, I do not want to lose my emotions but have to watch out and keep a check on them to stop my emotions becoming too much for me.

In the here and now of this Saturday afternoon, the weather looks bad, lots of wind, thick cloud layer over the city.

Three times brilliant sunshine illuminated the street and the buildings across the road only to vanish once more behind the clouds.

It has made me realise once again how like life the weather is, there are dark times and sunny times.

Nothing remains the same it is all part of a dynamic process and we are part of this, a very essential part.

The sun just shone brightly again and the birds are getting busy collecting as many nuts as possible before the weather changes for the worse.

Whatever the weather I intend to enjoy this unique day with my darling Richie and our sweet dogs.

Hope you have a good day too.

Fysio today.

Slept well again last night only problem woke up too early and could not get back to sleep again.

Was in too much pain to sleep properly again tried my best to stop myself moaning which is not easy to do.

Eventually did manage to slip back into a pleasant dream which was great as I could put off being totally awake.

Nice being in that in between world between sleep and being awake, had to admit that I was awake when Spike crept into the room.

Did my arm exercises and then the day could begin it was Monday and Monday was fysio day.

Its good that I get fysio twice a week as it really is good for me keeps my muscles loose.

First Mathilde gets me to do some exercises some with weights and some without after that she moves my arms and massages them as well.

Afterwards its great feeling very relaxed which sets me up until Thursday and my second fysio session.