Shangrila

31/12/2006

Just back from four weeks at the rehab clinic. It’s now 5 months and 12 days since hearing the words “you have got ms” on the 19 July this year. A mere 5 months seems like a whole lifetime away as everything has changed dramatically. At first it was only my balance that had gone, at first I could hobble with a stick and for awhile that went ok but then it became clear I needed to use a rollator (walking frame on wheels) and before I knew it the rehab clinic had put me into a wheelchair on 22 November and very quickly it became clear I could no longer use a rollator and I would need to use a wheelchair fulltime. It has been fast far too fast this transition from walking if badly to not at all really scary.

At first the wheelchair had been only for trips outside the flat, once we got to our destination I could hobble around with the aid of walls and furniture and from September with the aid of a walking stick. At the end of October I had to admit that hobbling was going rather badly and to avoid falling I must use the rollator.

No problem until the second week in November when I fell with the new lighter rollator, this was the day when the strength had suddenly decreased in my left leg and on getting up that morning I swung myself out of bed with the handholds MD had constructed over the bed. But on this morning instead of delivering me safely next to the bed and on my feet, it swung me around like I was an aspiring trapeze artist before dumping me on my knees on the floor next to the bed. Luckily I could just manage to drag myself up on my left leg, as the right was totally weak.

Then I hobbled into the front room in search of my rollator and clean clothes. I found the rollator and reached for the clothes hanging on the rack over the balcony door. And the next thing my knee had locked as I had over stretched to reach the tee shirt. Trying to steady myself on the rollator without the brakes being on made me fall and this time I could not get up. It took MD 15 minutes to get home to scoop me up off the floor. Just in case I got cold in the meantime one of our Jack Russell’s decided to come and sit on me.

From then had to get the mobility bus to carry me up and down the stairs, as I could not walk down without help anymore. It’s not a pleasant experience being carried up and down the stairs. Very worrying and totally out of my control, have to trust all goes well and we don’t all fall down the concrete stairs. The rehab clinic were so worried about me spending too much time at home that they offered me a place there for a month in the hope my rehousing needs would be given a boost.


Back home again since before Christmas and find myself back to square one, stuck up two flights of stairs dependent on being carried to go out and trapped here in inadequate flat with not enough room or safety, less fysio has meant I have lost strength and stamina as every day lost counts at least double in muscle deterioration. Felt hopeful in my last days at the rehab clinic that I would be able to pick up my life again but being put back here without any mobility and safety is very bad for me.


And now other things are not working too well my left leg is also getting weak my right leg is getting very spastic my hands losing their feeling getting all cramped up and when I lie down in bed often my torso gets spasms and goes rigid. I can’t get up or go to bed independently and can just about wash and dress on my own. And if all that was not enough my right foot is getting all swollen because of fluid retention due to lack of movement. Life sure is different to before the 19 July.

Can’t believe how in July I thought I was having a bad time, in the light of how things are now it was not so bad as now, it was not nice but I could still leave the house still have some independence now all that has gone. In July I could still hobble downstairs and across the road, I could get up when I wanted to and shower, dress and make and eat breakfast. Then oh bliss I could carry my cup and bowl of cereal in one journey to the front room and plot up in front of the pc to enjoy the newspapers with my breakfast. Now I can’t do more than one thing at a time, which is also better for now as I learn how to get about in a wheelchair.

Now I need MD to get me up during the night when I need to go to the toilet, luckily our toilet needs during the night are almost identical, but still it’s dreadful to have to need so much help. At 5am MD gets up and so do I for a quick visit to the toilet and a hand back into bed and hope to sleep till 6am. Then at 6 am I have to get up as MD leaves for work. I stagger around in my wheelchair half asleep with nowhere to carry on sleeping and unable to do anything else but hang around uselessly.

Most days I feel ok about myself but sometimes especially now I am stuck at home again I find myself wondering what use have I got these days. At the moment it seems not a lot as there is nothing /no function that I can fill. Must remember what I was recently told, oh yes you are not loved for what you do but who you are. Find this a difficult one to absorb. And in my case am not totally convinced this is true for me surely only for the others.

What’s horrible with all this ms bullshit is the effect its had on everything suddenly I am not first and foremost Herrad but a sick poor zielig (pathetic in Dutch) person where all communications are constantly about my ms I am no longer sexy, dynamic Herrad or intelligent or busy or even just plain boring me but a medical case.

Slowly but surely this is coming in between others and me. I am turning into a collection of symptoms and orifices as the ms jo jo’s up or down. And as I realise that I have little control over its progress. It’s horrible to be so concentrated on myself and my condition hate to be so self absorbed so up my own arse. Sadly that too is true, as I have to help myself when having a crap is a problem. Suddenly you are back to early baby stage with your own shit on your hand but what do you do when you can’t squeeze the last bit out of your bottom.

This is the sad fact of life and confirms how flexible we are and how many compromises we are willing to make in order to live with the way it is and make the best of it all. But it does make me feel different feel very much handicapped and somehow in a parallel reality. Mind you the way I am going I shall be declared a saint any day now.

Joking aside I really need to move on now and explore my new life. Been telling the various authorities since August when I noticed that my condition was deteriorating quite quickly that I needed all the facilities and mobility aids that I am entitled to now and not later. Can’t understand why they cannot let me have a new flat a bit quicker.

Why do they not have systems in place to allow them to find a suitable flat in their database? The same authorities could provide the people from a recent building disaster with fully equipped replacement flats in a mater of weeks. What’s happening to me is happening to lots of other people. We are all waiting in our homes that are now totally unsuitable places to pick up our lives.

Despite it being the year of the handicapped this year and despite it being law since last year to make sure we all have the same access and we can all take part we the handicapped are not an interesting item. Despite a lot hell of a lot of money being made from us, despite the million-dollar industry that is the disabled industry no one has the political will to make sure the facilities are there for us.

We after all are not as important as the displaced people, most of them owner occupiers from the building disaster as that involves money and ours doesn’t in fact most of us due to no fault of our own by being handicapped have now entered the territory of the deserving poor.

It’s a struggle to get everything that I am entitled to as everything has to be cheap not suitable not good for my situation and condition no I am matched to the wheelchair and not the other way around. Again very short sighted, as bad aids will only result in a shorter life for both the aid as well as the person involved. Give others and me what we need and we can manage better and remain as independent as possible.

I have been waiting since September for me own wheelchair and cushion as well as fittings in the flat to make my life easier and safer. In November I was told that the handholds would be installed as a matter of urgency. As I understood it this would be a priority and would be in place very quickly, come Christmas they would be there for sure. Here we are nearly mid January and still no sign of either fittings or the mobility aid so MD could take me down the steps without the aid of third parties or the mobility bus.

This Saturday I got a letter from the burocrats at the housing department. They are abit like John Prescott they still have their salary and office but no department, and no houses to allocate. Perhaps in a month’s time I shall hear whether the aids will be installed. First they need to receive a tender from the nominated company, then they will decide based on the price they are quoted if the aids are to be installed.

I find out from the letter that my case manager and CIZ have only applied for two handholds, one in the shower and one in the toilet and minimizing the doorstep to the shower. No mention of all the other items, which I thought, was also asked for, such as additional handholds at each side of the toilet plus other adjustments. In the meantime I am even more in limbo as I cannot do too much here safely on my own.

Still trying to stay as optimistically as possible and telling myself happy days will soon be here and all will work out keep calm the new flat and all the aids will be here soon. But time and again I heat about cost cutting and other dehumanising bullshit that really disheartens me. And I am still waiting foe everything.

While at the rehab clinic I tried out a variety of chairs and found one that was excellent for me and my condition and needs but I can’t have it as its not only well made but it does not come from the company with the monopoly on contracts from the council and it’s too expensive. So now I will get a chair that is much heavier and nowhere as good. A chair that will be too heavy, difficult to use and hurt my back.

Everything you are entitled to is a battle as they try to fob you off with the inferior items, you can have a bed that can be lowered and raised, as you need. It’s great to sit up in bed and to get up independently. But not in one of those hospital beds. In a hospital setting they blend in well with the rest of the medical equipment but for a home surely they have modified versions so the person can keep their dignity as well as preserve some of their personality and their intimate relationship with their partner. But no they don’t, if you want that sort of bed then you have to accept the one-persosn sexless version.

Have to sort something out with the bed I need the freedom to get up on my own

The next battle is getting a fitness aid called a motormed viva 2. This is a brilliant fitness aid that is basically an exercise cycle without a saddle you remain in your chair and place your feet in the footholds and activate the motor. You pedal yourself and the motor helps you out this is really good for keeping some movement in your legs and is really important for good blood circulation as well as preventing various complications and stopping spasticity. But again it seems it will be unlikely for me to get such a machine cos of costs. Shame as I really need it to stop getting very spastic and good for blood circulation especially my right leg which I can’t move.

They are not cheap at 3,500 euros but much cheaper than providing me with full time care, which I will need if I deteriorate at too quick a rate. Which I am likely to do if left where I am now on the second floor flat which is not set up for me where I can not get into the shower and where everything makes me feel helpless. Here there is no room for movement only room to sit and contemplate the state of my body and hope my mind stays optimistic.

Can’t believe how difficult I thought everything was in august and September compared to now it was nothing at the best a party and at worse a mere inconvenience. Here I am getting depressed and not easy to live with, not able to communicate it’s shit.

In fact at the moment all the shit has taken its toll, it’s not just the waiting but also the incredible burocracy, which generates enormous amounts of paperwork. Most of which happens in order to justify the job and not to help or inform. Bloody hell what with all the paperwork plus the waiting it’s a fulltime job being chronically ill because of all this time consuming intrusions in your life it takes even longer to terms with the new situation. Can’t seem to find the time and space for myself. The first month was quiet but just when I thought now I will try to sort through how I feel the whole application for aids, such as wheelchairs and new flat took over, before I knew it five months have gone by and still in the same situation. Oh happy days!