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.

Pain Relief Update

A few weeks ago I wrote about a test I was trying with a new cushion and pressure socks to see if I could get some relief from the pains I have in my legs, I hadn’t forgotten to update you I just wanted to give it a bit more time to see what the results really were. The pressure socks do seem to have had a positive result and I am finding the pain in my lower legs has greatly improved, not gone but a lot better than they were. I am wearing them from when I get up in the morning right through to my bed time at night and there has been two positives. The first is that I have no edema in my lower legs at all! For the first time in not just months, more like years, I have my skinny bony feet back, there is no swelling and that in itself means no pain from tight stretched skin. The area on the top of my foot that I was slowly scratching the skin off is healing up properly, the difference is well worth the small amount the socks cost me. I knew the problems was probably coming from sitting all the time, just as you do on a long haul flight, OK I didn’t have the pressure changes but fluid was pooling, it doesn’t any longer. The pain issue is slightly different there are still spells of intense pain that gets worse as the day goes on, and it has had no effect at all on the spasms or any of the pain I know comes from my MS and Fibro, but even a small improvement is really welcome and there has been some, on top of just that caused by the fluid issue. I STRONGLY RECOMMEND if you have similar problems buy those socks now.

The cushion is a different result, it seems to help some of the time but I have to keep changing positions and add or take away other cushions from under it. I would now describe myself as being like the “Princess and the Pea”, I am a that “Princess” and it is a constant battle trying to move the pea around, as you know you can’t get rid of it. It is totally impossible for me to now sit for more than maybe 10 mins without having to change position slightly and try again until it gets to painful to remain in that position and I am then off again. What the cushion is really doing is it is supplying more options. I now also take it with me when I move over to the settee having it with me all the time, rather than just up here at my desk, has helped a little. Sitting is the simplest position that we all expect to be always able to do, finding yourself unable to do so with any degree of comfort and without the option of standing isn’t only difficult but it is also frustrating. I honestly don’t know when last I have managed to stay in the same position for more than just a few minutes and I know that that isn’t helping with the other big problem with MS, fatigue.

I have dug out a letter that I received on the 26th June regards an OT coming to the house well we are into September and I haven’t heard anything since. I have tried this morning to phone a few times but as it always seems to be with any NHS phone line it is constantly engaged. The OT was meant to be coming to sort out seating that would make life bearable, the letter said that I am not a priority and it could take time for an appointment to be available but I didn’t expect to be still waiting over 2 months later, which of course is on top of the two months of passing me from person to person before passing me to the OT service.

Adams mother has arranged for me to see a lady she knows through her Yoga class, she specialists in massage and is properly trained in medical massage not the essential oil type you get in a spa. She apparently works with other patients with MS and others forms of chronic illness, so I will be calling her soon to see when she is available to come and see me and find out what she thinks she might be able to do. To those who have been reading my blog for a while will know, I’m not big on alternative therapies so for me to accept this kind of really shows how much pain I am in and how desperate I am now to get relief from it. I am trying to keep an open mind and be prepared to try at the very least and be astounded at the very best.