Taking the pain

Despite being up nearly an hour early, I am already so far behind on my day that I doubt I will really be able to catch up. I woke both needing to go to the loo and the pain in my left arm that I have woken with a few times recently, was back again. I quite simply can’t work out what I am doing to myself to cause it, I know it could be something to do with my PRMS as I have had continual problems with that arm now for years. Waking and finding that it feels heavy and sluggish has happened so many times I couldn’t possibly count them, this pain though is new and is in places that mean I am sure I am putting it in some odd position while sleeping, four hours on and it has nearly totally vanished again. Being up early had a pleasant twist though, with Adam now making it into bed at night I didn’t have to return to bed and just lie there waiting for the time to pass, I could just come through here and start my day. There has been so much going on in the last week that I realized that I haven’t been for a shower and Adam hadn’t reminded me to either, so for the first time in years, I had a shower in the morning. I know it wasn’t probably the best idea as my balance for some reason always seems to be worse when I am first up, but it was an oddly pleasant thing to be doing, despite the fact it was totally out of routine and it kept going through my mind that I was simply doing the wrong thing, only time will tell. It doesn’t happen often, but for once I actually enjoyed my shower. As I have been doing for a long time, I now always twist the showerhead so that the water isn’t been sent at me like vicious spikes, more a gentle cascade, today was one of those days where it was just perfect. When there is something that you have to do, but you know that it is going to cause pain, well you are put off from even trying. I sometimes even wonder if part of the reason that I totally forget to do it without being reminded over and over, is in fact part of the reason my brain finds it so easy to ditch as a possibility, a touch of self-preservation. Today it all went well and I found myself in the rare position of actually not wanting to leave the warmth of the water and I did stay a little longer than normal, despite the fact I knew Adam would be wanting in there at any minute as I had heard the alarm sounding not that long after I got in there. It was a sudden pang of guilt that shoved me out, as I remembered chasing him out of his shower a few days ago so I could go to the loo and here I was dilly-dallying.

For three years now we have lived with our living room suite being covered by throws, it used to be totally beautiful. We chose it as after months of searching, I had eventually found two settees that were the perfect size to fill the two spaces we had in the room, plus they were pale cream with loose covers so that I could wash them whenever needed. Added on to that, I knew I had found a total bargain as together they cost less than I had seen other similar suits costing. Everything was perfect for the first 4 years, then the material started to thin in any place that received heavy wear and each time I washed it, it got thinner and thinner, so I covered them up and although I thought they were a total mess, I had no other option at the time. A couple of months ago I received a payment that I didn’t expect from the credit card company, thanks to the “PPI” scandal I got back every penny I had wrongly paid them, plus a small amount of compensation. It isn’t quite enough to pay for the work, but close enough when I add on the money I have saved by using an e-cig instead of real ones all the time. It means we can at a last afford to get our settees looking like new and fit to last for many years to come. This morning we had our second quote, I always like to shop around before I say yes, so we were both up and speaking money and fabrics before 9am. Thursday will hopefully bring our third and final, but so far the one we saw this morning is winning. There were several things that made his company stand out too me and the materials we saw were much better quality. As soon as I said that I had MS, they said at no extra cost due to my illness they would include changing the cushions for orthopedic one, I might actually be able to get up off it without feeling as though I am fighting my way up a mountain. Thursdays appointment is going to have to come gold plated and wearing feathers, otherwise I honestly think they are on to a loser. It’s odd how something as little as the expectation of having a suite that I can be proud of makes to how I feel, if I could, I would be walking with a distinct spring in my step, the first for a long time. It is also more than that, it is one of the things that is on my list of things to sort out for the future when I am not here. I have a strong need to know that our home will take Adam onwards without the hassle or expense of doing the things he would just put up with. I don’t want him to be putting up with anything, I want things perfect for him and as the salesman said, do the work now and it should make the suite last at least another 15 years. The last ten days have turned our lives upside down, it somehow seems right for us to be sorting out other things together as well.

I seem to be popping more booster pills in the last few days, I sort of expected this, it is a fact that all forms of MS don’t react well to any form of stress. Clearly when life takes a turn and you have to almost wipe the slate clean and start again rebuilding relationships and all the things that surround them, well an increase in pain and fatigue is inevitable, which without a doubt is all part of our problems. Adam has spent so long trying to protect me from the world, to maintain a calm and stable home life, that he just buried everything out of fear of making my health worse. I can’t speak for him, but I know enough now to know that what I have seen in the last few years was a totally loving and caring front, covering a mind filled with a million things that couldn’t be said. I have said it many times before, but an illness like mine doesn’t just affect the person with the illness and I fear that right now there are carers out there doing exactly what Adam has been doing, all I can say to any reading right now is talk, please talk. From my side, the last thing I ever wanted was to put him under any pressure, I still can’t believe that I was blindly going on with life unaware of it all, but I guess that we all want to believe that life can go on as it always did, Adams desire to care for me in every way was working too well for me and not at all for him. Taking a few more tablets for a short while, well it’s worth it, I can manage a bit more pain if it takes away the pain from him.

 

Please read my blog from 2 years ago today – 28/01/13 – There is no fear.

I had a message yesterday from someone on Twitter yesterday in which they said they admired my ability to cover my fear, I didn’t answer it at the time as 140 chrs would have been impossible. I just hope the lover of honeyed parsnips is reading today. To some I know that it will sound odd……..

3 thoughts on “Taking the pain

  1. YOU MAY NOT BE A PHYSICAL 10, BUT IN ALL OTHER PARTS OF YOUR CAPABILITIES; YOU ARE DEFINATLY A ” 10 “. YOU ARE MY HERO, FOR THAT I THANK YOU. LOVE AND HAPPINESS TO YOU AND ADAM.

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  2. Having only recently connected with you on Twitter, I decided to pop along and take a look at your blog this evening. I have only read today’s post, however that is all I need to appreciate what an inspiring and brave lady you are. I feel honoured to have connected with you and I shall be visiting your blog and finding time to go right back to the start of your journey. I have nothing but admiration for you and look very forward to following you on your journey… Through both the ups and downs. Much love. Sadie

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  3. Hi Pam. My husband you may remember or not is also disabled. He is also my 24/7 caregiver. I cannot stand more of than 45seconds. On afternoons he knows he is gonna be gone a while he places a plate in tiny fridge in my room as kitchen is not accessible to me w/out assistance. He showers me combs my hair the only thing I still do is brush my teeth with battery toothbrush and take care of loo needs. But that is becoming harder and yes! Thank the good Lord for disposables. He asked me for a divorce in Dec. I think you would called the way I felt..was gobsmacked. After a few weeks I was able to get him to talk to me about it…what it came down too is he was trying to protect from some personal financial stuff. And he thought we could not get a daily caregiver without div. because our income combined means just our medicare but if we “d” then I would qualify for help and he could put me in nursing home. He was looking out for me. We celebrated our thirty yr Ann. Under this cloud of not knowing. We r trying to get appt. so we can see. About caregiver if my diseases qualify me for medicare to pay. But no matter what I will not agree to “d”. He will have to push for it, because of my personal beliefs I cannot agree. Plus the no. One fact is this: we love each other. I married my best friend. I think a lot of care givers at some point go thru what my dh and your Adam went thru. They don’t realize that by trying to hide truth from us ..in the end does not help us but causes more stress than ever. Has ourselves questioning everything bout the relationship and self. I hope that both of us will keep up in positive thoughts and Trust that all will be well.

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