Disintegrating

To my surprise yesterday afternoon I had not one but two phone calls, our phone seldom rings as being ex-directory and on the Telephone Preference List for over 15 years, we are not bombarded by nuisance calls. I am so glad that I have been working on getting rid of all companies that think they have a right to call anyone whenever they want, not even companies I have accounts with call, mail or even email me as I have kept everything as tight as I can against it ever happening. For our phone to ring, it has to be someone who knows us, the first one I answered without a second’s thought as it the display said it was my doctors and as I wasn’t expecting them to call, I was a little surprised. It was the receptionist just making a call for me to go in for my flu jab, despite the fact I have had asthma for years and now COPD, I haven’t had the jab since I became housebound, so I was a little surprised by the call. I explained that I was housebound to the receptionist and that I haven’t had the jab for years and she seemed a little flustered as to what she should do, but said she would tell the district nurse, then she hung up. I am guessing that I will hear no more about it as I vaguely remember a similar call about 6 years ago, I think that it is my recent diagnosis with COPD that has put me back on the list. It left me wondering about why no one has come out to give me the jab as both Asthma and COPD are equally reasons why I should be protected against the flu I may not be out there able to pick up the illness, but people do come here and any of them could pass it on to me. With Adam working at a hospital he is given the jab routinely so that access should be closed, but not all are. I will wait to see what happens, but I am beginning to get the impression that just maybe because I am a quite patient who contact them rarely other than for my repeat prescription, that some of the things that should be done, like taking my blood pressure every three months due to my being on HRT, taking a swab of the ‘thing’ before referring me to a hospital and the flue jab, are just not being done because someone would have to come to me.

The second call I had, well that one is much more straight forward, it was from the department that look after the bed elevator, they come out every now and then to just check that everything is working properly and that it hasn’t suddenly developed a fault that might cause a fire or something. It took them about 20 minutes the last time they called, but I have to say there is something un-easing about a total stranger being in your bedroom, fiddling with something under your bed. In fact he has just arrived and is through there right now, at least unlike the last one he didn’t start moaning about the fact that we have very low lighting in our bedroom, I have never seen a reason to have strong bright lights in there, it isn’t as though you need it for anything? Most of us know how to get dressed in the dark if needs be, so why have spotlight level brightness? Personally, I can’t actually remember the last time, other than for workmen that I have even turned any light on in there, I stumble and wobble my way in to go to bed and stumble and wobble my way back out, lights don’t help in that process at all. He just called for me to go through and sign off that he has been here and has now gone, he was only here for about 5 minutes, it leaves me wondering who did their job as it was supposed to be done and which one is swinging the lead? Getting up and down twice in a such a short period of time has done nothing that was good for my legs, they just don’t know how to deal with it.

We all take standing up as a simple act, one that we do without the slightest thought, well that slowly goes away as time goes on for all of us, which is why it is one of the parts of PRMS that leaves you feeling old before your time. I am just 53, if you ignore knowing that fact, my long purple hair and any other clues to my true age and just watched how my body works over a day, I have no doubt that I would fall into the age group of somewhere between 65 and 85, well some are more sprightly than others. If I were to base it against my grandmother who died at 86, she was more agile two weeks before she died, than I am today, chronic illness doesn’t just steal your health, it steals your life and your age, doing so with far to much ease. Just letting someone into and out again of my home has left me with thigh and calf muscles that are burning from the excursion, I haven’t run a mile, or walked 5, just a mere 20 yards at the most. When I fist sat down again my lower spine when nuts, throwing 3 fast strong spasms at me that shook my body as though I was a marionette on strings that were being tugged at violently. They didn’t hurt me, the pain that should have been there covered by the drugs I live on, they just throw me around a bit, leaving me glad no one was there to see it, as I know it must have looked rather odd, I guess it always does.

I think all of us find it hard to age, watching the odd grey hair turn into hundreds and fine lines into folds, to put on the years that time has lined up for us though is one thing, having them torn away is something totally different. So OK PRMS hasn’t made me go grey any sooner than I would have, but I stopped worrying about that when I found a three long grey hairs on my daughters head when she was just five, but it does change your skin, remove your muscle tone and make everything head north prematurely, with no way of ever dragging them back. It’s not like I can just start doing exercise and work the muscles back to how they were 10 years ago, I can’t even manage to loose any weight, as weight comes with every year you spend sat down and weight alone is ageing. Ageing faster than others isn’t something that we can avoid or change, it is also something that no one tells you is going to happen to you. I know that if I had know in advance that it might have changed little, but I might have made more of an effort to do the right things that bit longer, pushed myself to exercise that bit more when I still could have. Ultimately would I have really changed much, I don’t know, but I would at least have liked to be forewarned and given the chance to try.

 

Please read my blog from 2 years ago today – 17/10/12 – Decaying slowly

I have tried for the past few days not to write about or dwell on the pain that I feel in my legs, it hasn’t gone away but I was trying hard to distract myself in the hope that its impact on me would be lessened, it has made no difference at all. I suspect it was a stupid idea but well even……

2 thoughts on “Disintegrating

  1. Truly inspiring and no one truly understands
    the pain, loneliness, struggle, survival and misunderstanding
    of chronic diseases. I have Polycystic Kidney
    disease, not known about. Iv had a transplant,
    Yes but still have and the scars of three year
    Journey..but we get up and keep at it.

    Like

  2. Wow, my mother inlaw just passed from copd which she lived with for over 10 years. I totally understand your dilemma without adding Ms into the equation. My mum was also diagnosed with Alzheimer’s at 59. She’s still home with us 9 years later, how lucky are we. I will pray for you daily, sure I don’t know you but your giving something to the world, knowledge, positivity, time, gratitude. You are an inspiration to many who feel a chronic illness is a death sentence. Thanku just thanku I needed to read this today. Love and wishes coming your way. 👍👍👍👍👍

    Like

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