I haven’t written anything for almost a year! Obviously time for a catch up…….though it’s not mightily positive I’m afraid!

I don’t ‘go on’ about my health generally, or certainly try not to, and mainly manage to keep cheerful and positive, and do all the things I know I should, like eating healthily, exercising regularly, keeping my mind calm and resting when I need to. The diagnosis of MS was hard to process and accept after being ill for so long without answers, but it also brought relief to know that I wasn’t going mad, and that at last I would be believed which at times in the past I felt I wasn’t.  

Life is increasingly difficult, I have a lot of pain, and fatigue, which I never knew was a factor in MS when I was a physio, I just thought you lost function over time.  I also have cognitive problems, so find certain concepts hard to grasp.  This drives Richard nuts during films!  I wasn’t great with plots before, so you can imagine what it’s like now….. I find financial matters very hard to deal with too, and suffer from anxiety which is very distressing at times.  The whole political scene at the moment with uncertainty over Brexit is still very difficult for me, although understanding, or trying to understand the complexity of it all must be good for my cognitive health, but that’s the only positive I can see!

I had 2 nasty falls in Wales a month ago when we were away in Heidi, and injured my left shin really badly, which has taken a long time to heal. I didn’t realise at the time how badly I also hurt my shoulders, as I landed on both knees and outstretched arms, my shoulders have become so painful, I can hardly move my right arm, and the left isn’t much better.  I am going to the physio tomorrow, as I don’t seem able, even with all my knowledge to help myself get better.  The falls jarred all of my body, and have really knocked my confidence, I feel afraid of falling all the time, and now always use a stick, or walking poles when I go out for a walk, but even doing that hurts my shoulders more.  I have just been for my shoulders x rayed today which I suspect will show degenerative changes.  My right arm has done some pretty repetitive physical manual work on patients in its time!  I still can’t quite believe how difficult my life has become on a daily basis.  I need so much help from Richard now throughout the day, even chopping veg, hanging washing out, all the stuff I took so much for granted in my life, never mind just walking about quickly and without pain, bending and stretching without worrying about the consequences, I really can’t remember what it is like to be pain free.

I wanted to write again on my blog as it is a sort of weird record of my life, and I want to be authentic, for those who really want to know how I am.  Not the general “hi, how are you/are you ok/alright?”, without waiting for or wanting to know the real answer.  I also get “you look well”, or “you don’t look ill/or in pain”.  This is the great tragedy of ‘invisible’ illness, although mine is becoming increasingly visible sadly.  I didn’t know that disability crept up like this, I didn’t know how it felt to have to ask your partner to pull your trousers off your feet at night, or help you fasten your bra, or help get you out of the bath, I didn’t know how helpless you can feel when you can’t even chop up a carrot.  I didn’t know what it felt like to have to rest between having a bath or shower and getting dressed, and then again before doing your hair.  I didn’t know what it was like to have to plan and pace your activities, especially social ones, and the fallout and fatigue that happened afterwards, which may last for days.  But then I think of the life that I’ve had, how lucky I have been, 2 long marriages, 2 lovely sons, and a gorgeous grandson, and two daughters in law that I love too.   A long career as a physio, which could so easily have never happened, as I first had symptoms of MS when I was training in 1988!  A good and loving man for a husband, mother in law, step son and wife, a mother, a brother, sister in law and nieces and families all nearby. I am very blessed…..

So……..what next? How do I get through my days? One moment at a time, as Vidymyala Burch said when she was in great pain, and couldn’t sleep.  She said “I only have to get through this moment, and this moment, and this moment……” it was my greatest lesson, and one which I adhere and cling to everyday.  We only ever do have this moment, and when things get really difficult, I always think of her and stay firmly in the present.  Ruminating about the past, or fearing the future makes me sad and anxious, and so I do things which bring me joy, like a couple of lagers at tea time, or a visit to a pub for lunch with real ale, or being in nature, singing with my lovely choir in Stainland, stroking my gorgeous Izzy and laughing at her quirky (probably demented) antics, going away in Heidi, or riding my beloved Trike which Richard has now fitted with a motor to assist me up the hills.  I am having trouble riding it at the moment because of my shoulders, but hope to be ‘back in the saddle’ soon.  Sadly even all my craft activities are on the back burner until my shoulders ease, but hopefully that will be soon.

The most important thing for me is my spirit, if my spirit stays strong I have better days, even if the physical pain is strong.  I am taking medication now which helps with the nerve pain and my mood, I am open to help now, whereas before I wanted to manage it all naturally.  I wish that medical marijuana was legal in England (as Sativex is in Wales and Scotland), but sadly it isn’t available on prescription here…….

I used to feel a bit of a fraud using my blue badge which was hard fought for, as I could walk further than the designated distance.  In my appeal letter following the 2nd rejection in 2 years, I pointed out that because I had been a physio I knew that maintaining my mobility was vital.  Also I pointed out that my low energy was such, that if I used it up following difficulties with parking, and further to walk, it left me with little or no energy for other things in my day, especially getting out into nature, which is vital to my mental health.  Thank goodness things seem to be changing re: blue badge criteria, and they are to start issuing them for ‘invisible’ conditions, such as anxiety, autism etc.  When I first got mine I also put a sign near my badge saying “Not all Disabilities are Visible”, as I often got strange looks, especially on a ‘not so bad’ day (I don’t get good days!), and though I appear to be walking well on the ‘not so bad’ days, I still have a lot of pain, all the time. My blue badge has made my life immensely better…..

So, that’s me for now, I will check in again before too long………..❤️