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………..❤️

Hello, well what a year this has been!  Lots of hospital tests, and ‘procedures’, culminating in the summer with loss of balance and decreased hand function, which led to an emergency MRI and finally, a diagnosis.  I have Multiple Sclerosis (MS) – 12 lesions were found in my brain, and 2 in my neck.  This has taken a lot of processing, and coming to terms with, as although I was glad to finally get an answer, the terror and fear for my future has engulfed me at times. My mental health has felt very fragile at times, and it has been ‘work’ on a daily basis to keep myself from going into severe depression.

I have been mainly concentrating on keeping as active as possible,  continuing to walk daily with Richard and Izzy, and I got some trekking poles so that I can stride out more.  I have also bought a fabulous Pashley handbuilt tricycle.  Unfortunately I have had a few mishaps getting used to riding it (which is surprisingly difficult to say it has 3 wheels)  which have shook me up a bit…….but it is work in progress.  I even bought some snazzy cycling gear so that I look more sporty!  It is quite difficult to get to the canal towpath, but I go along the pavements, as they do on the continent.

So……….my life has certainly slowed down, we don’t go out socially as much as before, mainly because of the fatigue.  I need to rest more in the day, sometimes after our walk I need a rest before my Epsom salt bath, and then a rest after it! I can’t really plan ahead a lot, as I don’t know how I will be.  I am sometimes appalled at how I feel, as I have pain every minute of the day, particularly in my legs and feet, and the nights are the worst, as sometimes I can be up every hour with my tetchy MS bladder. I also have food sensitivities, and have cut out gluten from my diet which is definitely helping with my gut problems. I still manage a couple of beers sometimes though!

I need to keep a positive attitude to keep myself buoyant, and stress and worry bring me down both mentally and physically.  I have to be really careful around political stuff.  I was (and still am) profoundly upset by Brexit.  We came home from France early in 2016 to vote in the referendum.  I was so shocked at the result, and now the mayhem and divided country is deeply upsetting to me.  I love being European, I hold dear the fact that peace has been held in Europe for 70 years, and that we are all ‘in it’ together.  Of course there were problems, but nothing that we couldn’t sort out together, and being part of the solution with reform must be better than being an isolated nation, out there on our own in this scary world.  The Trump situation in America also distresses me greatly, but also racism, poverty and homelessness bring me to tears regularly too.  I worry for our children and our grandchild, and hope that love and goodness and kindness will prevail.

I am sad that because of my condition I can’t ‘do’ more, such as volunteering at a food bank, or homeless shelter, which I would love to do, and I feel my life is shrinking sometimes, but then I balance these feelings, with ones of gratitude and acceptance, and know that my life is full of good things too, and that I am so lucky.  So, I practice gratitude, even on my darkest days, and I smile!  Smiling actually produces endorphins into the bloodstream, so even in the night if I can’t sleep because of pain, I smile………. when I feel sad, I smile!  Honestly, it really does work, try it!

So, there you have it, my update, not great, but hey ho, could be a lot worse!

My spirit soars high
Above my struggling body
What has brought me to this time?
Me?
Who is that?
My physical form, or the whole of me
Including my soul……….?

When I am lost in the mire of pain
Which seems so constant now
It is difficult to tease out the strands of ‘me’
They are there though, like tendrils, tempting me back –
Leading me back to my essence

What is the way forward?
I’m so tired of trying so hard to be well
Perhaps I should just let it be
And do the best that I can in each moment

The world feels very broken too,
Too many changes,
Making me wobble and doubt
That goodness even exists
At least, in any useful amount
There seems to be such hatred,
What brought us here?
Why didn’t I really see it coming?
I have obviously been blind

If I work gently on my inner being
Perhaps I can exude to the melting pot of the world
Goodness, and kindness
And peace,
And stop trying
So hard, so bloody hard…………
But rest in the knowledge that my spirit soars high
Because, in the end, when that final breath comes
I will be free, as free as the wind