Frustration.

Woke this morning feeling good, in time to give my son a hug before my Mother in Law took him to school and to give some sympathy to my eldest daughter who was not feeling well at all. Not to be left out, my youngest came in and very lovingly cuddled up, all be it briefly. Next thing I know is my wife informing me that it was quite late as I had fallen asleep again, if I was going to see any of Tuesdays daylight then I really ought to get a shifty on.

My wife brought me in my wash bowl and helped me to get washed. Because of my spasms, my legs randomly move, sometimes quite violently, usually bending and raising up to my chest. I can`t wash myself when this is happening as the last time I tried, I had what can only be described as a tsunami heading out of the bedroom, down the hall towards the front room when my legs knocked the bowl of water over. Not ideal, and a real pain for wifey to mop up. Once washed, I got myself dressed and then my wife came in and moved my chair next to the bed for me to transfer in to.  I was transferring using my “slidy board” but with the main power required on my left arm, it did not go well and we had to resort to the hoist again. This really frustrates me having to use the hoist, it means I still have to rely on help which is another thing stopping me from being able to stay away from home.

Once I was up, and in my power chair, I took my tablet had a cup of tea and after cleaning my teeth started on the tasks I had to do. I`ve been struggling with medication for my muscle spasms and bladder spasms and so it was decided to change it, the problem is that the meds the spinal unit have had my doctor prescribe for the muscle spasms can`t be obtained by the pharmacy. I spoke to my doctor to inform him and to advise him that I can`t make a follow up appointment to see him until I get the meds sorted. Then I called the spinal unit, what an absolute waste of time that was. “Could you page my consultant Mr —— please, I`ve been told to ask you to do this by the spinal desk, thank you.”    And so I wait, and wait, until the voice on the line is definitely not who I wished to speak to, it was the receptionist telling me that my consultant had told her to put me through to his secretary.

When I speak to the secretary, I inform her of the medicine problem, that being the fact that my pharmacy can`t get it, she comes back with three classic lines. “Is that the only pharmacy you have?”  “What does your doctors surgery suggest for the medicine?” and, now this is the best one, “What do you expect Mr —– to do?” So now in my head I`m thinking  well, I don`t know love, your first question, yes, second, my Doctor is directed by the spinal unit of my medication and thirdly, maybe his job would be a bloody good place to start. I asked if he could call me and was told he would when he was in clinic this afternoon. It`s now 22.50hrs, ten to eleven at night and I`m bloody sure the clinic is now over and I`m still waiting. The phone call I`m gonna make in the morning will not be as polite as this morning. I don`t want a cure for spinal cord injury, I just want the help they promise when you go to the unit. Waste of time when I was there and a bloody waste of time now I`ve left. Time for a transfer to another unit I feel.

So, it`s not always easy. I stay as positive as I can, making light of the situation where possible,  but it really gets up my a** when the people who are supposed to help don`t bother. Anyway, sorry about that little rant. What else did I do? Oh yeah, I have started to do some Airfix modelling again, only 25 years since I last did it. I have been building a Harrier which my step brother got me and my eldest daughter wanted to build the Spitfire I had. I needed some paints for them so I thought I`d go up town to the craft shop and I would get the bits and bobs of food we needed in the supermarket while I was out. The sky was clear but a bit chilly out so I put my hoodie on and started the trek up town which generally takes about half an hour to forty minutes.

Got to the craft shop but I can`t get up the step in to it, when this happens at shops you want to use you either have to get the attention of the sales assistant to serve you from the door, although this is only any good if you know exactly what you want (which I did), or ask a random passer by to help you by getting the sales assistant. You would not believe how many people will actually avoid you if you are trying to get help. It`s like a fear of people in wheelchairs, a wheelchair phobia if you will. Well I can`t speak for everybody but I know I don`t bite, well not hard anyway! Right then, back to it, the sales assistant got the items I needed and then I went to the supermarket. It was very clear to me that they didn’t have half of what I wanted so I decided there was only one place to head to, Tesco.

Tesco is completely the other end of town and, less than half way there…..it hammered down with rain, BRILLIANT! Now you “walkers”, (my affectionate term for able bodied people, commit that to memory as I won`t explain every time!), get the rain run down your coat and it generally drips off. If you are unlucky it may give you a wet butt, not for us “wheelies” though, (my affectionate term for people in wheelchairs. Again, commit to memory). Oh no, the rain comes down and pools in your crutch. The legs get soaked your morale hits the floor and you wonder what the hell you came out for in the first place, consequently I got picked up by my Chucklebus and I blew the shopping out!

So apart from a phone call with a guy I met in Frenchay hospital who has become a good friend, even though I don`t remember Frenchay, we have stayed in touch and he is always great to talk to, and a few e mails sent out, I’ve not really done a lot else, the time just goes so fast. I know I got up a bit late but the pace of life is so slow in the chair compared to what I was used to when I could walk. Perhaps my being in a wheelchair was the big boss upstairs getting me to look around and appreciate what I was missing out on.

Sleep well everybody, time for an episode of N.C.I.S

 

 

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