Navigating help

Today is the big day, Teressa will be married this afternoon! Despite all the changes in date and the whole trauma of actually getting John here, we have made it to the long awaited wedding. There are still several hours to get through before I log on to the live stream so it is a case of keeping busy, just as I expect Teressa did. Not so unusual in this modern world, but now feels so odd as I can’t be there this morning, Teressa and I have been through the build up of the big day together already. We were together on the morning of my wedding, her helping me to do my hair, sort out my make up and get dressed to go to the registrars. Adam and I married in the morning, so the day didn’t have such a nerve racking length of time to get through, it ran quite nicely in time from wake up to event, I can only guess how she feels now with another 3 hours to fill.

My morning has been filled further than I would have liked by the visit from the OT, yeh, yes she really did appear. Apparently the delay was cause by the merging of two different OT departments, one of them had a back log of 3 years to see an OT, so just over a year actually wasn’t that bad. She is hopeful that she will be able to get me the cushion I need and she looked at my bed and is going to send a gizmo that will go under the mattress and will lift me up to the sitting position so I don’t have the fight to get up by myself. I was really surprised actually at how fast it all went, she as always had a list of questions that I answered, you know the same list we have all answered that often, that I know I could have told her the answers in the right order without any prompts. With that out of the way she just looked at my cushion from a distance, and then asked to see the bed I have. Without having to insist or even paint my situation graphically it was all arranged simply and smoothly, I now am expecting to have both sometime next week, probably on Wednesday.

I am constantly surprised by the ease with which the NHS just gives me stuff. I suppose I have a habit of seeing myself as just an average person, without too many real issues, mad I know but I don’t see myself much different to how I was 10yrs ago. Getting into my head an image of a disabled person as being me, just won’t happen. I can still picture the person that if I was asked to imagine how a housebound person looked, and that imagined person just isn’t anything like me. Yet here I am and here is my house slowly being adapting to care for the disabled me. Sorry I still don’t see it! Clearly though all those outsiders who look me over every now and then, they see someone who needs help and give it without question. I suppose we all have an image of who we are, and although I wobble my way around the house, I still don’t see that wobbly person, in my mind I just walk. I guess I will never see it, I now have an image of myself being bed bound and still saying I don’t need help.

From the beginning I have somehow navigated the system with ease. I have never had to put up the fight that I keep hearing other do. All my benefits had been awarded on request, every aid I have asked for has appeared and the closest I have ever got to a problem has been in getting this cushion. Even medications have been given to me on request and I have had total control of the levels of that medication, nothing has been hard to acquire. There are clearly only two possibilities here, either I have been incredibly lucky or other see a person who needs and deserves all of it, and anything else required as well, not the me I see. May be I just prefer to feel lucky rather than ill.