The Journey Continues

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

post

 

I’ve been trying to get this blog going for ages.   I keep a journal where I have been trying out all the things I might write about on here.  The main thing is that I don’t want this to be a depressing place that people don’t want to visit. I’ve blogged before some years ago but that was very lighthearted stuff, and I deliberately kept my MS out of it, I didn’t want to be defined by it.  Things have changed since then. The MS has progressed sure, but many other things have changed too, not only in my life but in the country, in the world.  So, I have to write about my life with MS but I also want to write about daily life in other respects as well. There are many things on which I have opinions and would like to share them, hopefully to provoke discussion and debate but also to raise awareness of issues that many people don’t know about.

This all sounds very deep, I don’t mean it to.  I just want to give a heads up on what’s coming!  Be ready 😄😄

just one more thing, I won’t be writing everyday, sometimes it will be totally beyond me!

Advertisements

I think I’ve (not) done it (yet)!!

Photo by Clem Onojeghuo on Unsplash

I have been trying to get this blog right for months. I can’t seem to get it to be the way I want it, despite long tiring hours and needing lots of coffee. Then I discovered the wonderful Mr Scott Chow at https://www.theblogstarter.com/. His online tutorial is the simplest, most straightforward one I’ve ever read.  And I’ve read loads, believe me.

This blog is in early stage of development so bear with me if I seem to chop and change my subject matter.  Because of what goes round in my head every single day, I haven’t yet decided on a tagline, never mind deciding what categories it might fall into.  I suppose social commentary is a possibility but I’m not sure if disability issues fit with that. Boom! there are two categories straight off.  Maybe just writing about it is a way to solve the problem!!

My previous post about my MS story is getting there, but it’s not right yet. I am continuing to read, write, practice and hopefully learn. You know what they say if at first……………… and all that!

Fear is the path to the dark side – how to come into the light

Photo by Max LaRochelle on Unsplash

All Star Wars fans will recognise the famous Joda quote in the title. In 2004 fear took over my life. This is when the first symptoms of MS began, and I had no idea what was happening to me. I went from a fit, active person to someone who could only walk a short distance, had difficulty driving, could no longer type with both hands and so many other things. Almost overnight. The fear was intense, I suffered panic attacks, I cried a lot, lashed out at my husband and he at me. This was completely alien to me, we had been married for a long time and for the most part happily. Neither of us could understand why I kept falling over and had to rest for half an hour after my morning shower before I could get dressed!

I was afraid, paralysed by fear. This made my symptoms worse. By the time I was actually diagnosed (seven years later by a French neurologist!) I could no longer walk, write, feed myself. Since then I have had peritonitis, a urostomy, numerous hospital stays and visits, four wheelchairs, and most serious, sepsis with toxic shock which had me at death’s door.

Notwithstanding this, here I am. I’m not saying that I’m not anxious, I am a lot of the time. You never come to terms with having everything taken away, but you learn to live with it, and to enjoy the new life you find yourself living. I maintain my interests, reading, politics, food, I have taken online courses and learned (am still learning) to blog. Having MS in whatever form does not mean not having a meaningful life, just a different one.

One thing that is essential if you are reading this, don’t think this is all going to happen to you. It’s not. Every single case of MS is different. Whether you have yet to be diagnosed or have a diagnosis your feelings about it will be different.

If you are alone, afraid and depressed, all this may sound a bit smug. I don’t mean it to be, this is my story. It’s taken me 15 years to reach this point. Life is never simple Even without added complications such as illness, my life is a challenge every day. I won’t say the fear has completely gone, I don’t think it ever will, but I hope that anybody reading this will take something away from it that may help them.

If you are facing this alone, there are many supporters out there. Try https://www.ms-uk.org or https://ms.newlifeoutlook.com. Another useful site is the Sue Ryder charity which provides local Day Centres where you can undertake activities or just have coffee and cake! Find them at https://www.sueryder.org/

Photo by Adriel Kloppenburg on Unsplash

Busy times?

I seem to have been unreasonably busy the last few weeks, and yet when I think about it I’m not exactly sure why. Since I don’t really go out in February (or any cold time) I can hardly be said to be rushing about!! I have had a lot of visitors. Some have been MS related – occupational therapists, neurology nurses and the like – but I have had friends calling which is lovely. There are two reasons for this, my youngest daughter has given birth to a beautiful baby boy who is 3 weeks old today and I’m in love! This has involved some trips out to the hospital for example, and to her house, and we have looked after her now 4 year old (as of yesterday) a few times. So all my friends have wanted to know all about that, mostly because they have known Claire all her life. So instead of being Mums Inc. we are now all Grandmothers United!

But there is another reason. I also have a 6 year old grandson with cancer, specifically in his liver. He was rushed into hospital a day or two after his sixth birthday. He was critically ill and it was touch and go for a while but he came through. He was subsequently diagnosed with hepatoblastoma, a rare childhood cancer, which does not present symptoms until fairly advanced. He is stage 4. He has had chemo and is waiting for a transplant. My friends have known Adele for most of her life too. So they’ve rallied round as true friends always do. My daughter is now gaunt and distraught. The worst thing is because of being wheelchair bound I have not been able to get to see her or my grandson, I find this totally soul destroying. Anyway, last night I made the decision to get to her in whatever way I can. This has been an emotional rollercoaster for the whole family. We find it difficult to talk about so I thought I’d get it off my chest here. I send big love and thanks to my friends.

This could explain why I feel I’ve been unusually occupied. Life is a funny thing. We feel like we are living two lives, one joyful and the other heartbreaking. I find it difficult to reconcile the cruelty and kindness life gives us. I’m not sure either if that is in equal measure either. But I am ever hopeful that everything will be ok. Remaining positive, for me, is the only way to live with what cruelties life throws at us.

Sorry if this post seems self-indulgent.

Well I did say…..

I did say that I wouldn’t write every day and that there would be times when I wouldn’t be able to write at all. The last month has been just such a time. For some reason (?) I lost my mojo. I’ve been finding it really difficult to motivate myself, which I think must be a common problem amongst the disabled community. Sometimes I have so much energy it becomes like something is going to explode! When this happens I find that I withdraw into myself and I have no inclination to interact with anyone. Of course, this is impossible as I have carers twice every day and my grandchildren, friends who want to visit. So, this builds and builds making me more and more tired and depressed. The only way to try and break this cycle is to take to my bed. Just for one day. Where I can be warm and sleep when I want to. I did this yesterday and wow was it just the right thing to do. Today I feel 100 times better than I have for weeks. I upped the dose of my sleep meds last and had the best nights sleep.

So I’m writing today and the view from my wheelchair looks better today!

O my days!

I knew when I started this blog  back in May that I would struggle to keep it going regularly.  But now the summer holidays have passed and Autumn approaches I should have more time.  At the end of May we went home to our house in South-Western France for 6 weeks. We came back in time to see Hollie (our granddaughter on a soccer scholarship in the States) before she left to go back. After that a spell pin hospital with a chest infection having all sorts pumped into me, home for bed recovery.  Two weeks later a recurrence of a virus I have every year more than once which gives me bronchitis and more antibiotics! Add to that three weeks of cold turkey trying to wean myself off one of my meds to see if I could do without it – I couldn’t- only to have to go straight back on it!  So the Summer was not at all straightforward.

Now I feel ready to write again but where to start? Brexit? Boris Johnson? Donald Trump?  It’s actually all too much I’d be writing for hours and much of it would be boring and probably unacceptable.

What I will say is this; when did we stop doing politics in the way we are known for? In other words when did we forget what democracy in this country means? We had a referendum on whether we should leave the EU, the majority, however small, voted that we should.  4 years ago a in a referendum Scotland voted to stay in the union.  Yet, there are people from all sides in England and in Scotland making an almighty din calling for second votes.  I find it tedious in the extreme.  I’m also aghast at the behaviour of those in government, even those in the cabinet, making the Brexit negotiations so difficult for the PM and Dominic Raab as they are facing the EU from what looks like a position of horrible weakness.  A referendum is a democratic vote, therefore the result should be honoured as such. Those who are privileged to govern us should put up, shut up and get on with delivering the people’s decision.

Diana’s Legacy

Those of you, like me, who revel in Royal Weddings, will have taken a lot of pleasure from yesterday’s spectacle.  I loved watching all the hats and commenting on outfits etc with my friends and a glass of fizz!

However, not everyone is interested in watching something that seems remote from them and their lives.  To people who are struggling with how they feed their kids, where they live, whether they can get work or if they are in work whether they can earn enough to keep the rent paid and a roof over their heads.  I was horrified when I realised that even people who are working are being evicted because they don’t even earn enough to pay the rent and buy food.  This is a disgraceful state of affairs and must be tackled by government.  To these people a Royal wedding must seem like rich people having a party to which they know they would never receive an invitation.

Except for one thing, this particular wedding broke with established tradition on several levels.  It’s the first time that a girl of mixed race has married into the Royal Family and with her she brought a very different looking wedding than anything seen before.  Her mother was her only family and was very dignified, Prince Charles walked her down the aisle and looked after her mother readily and kindly.  The wonderful Bishop Michael Curry preached a sermon such as no one had ever seen, incredibly inspiring. And you can’t forget the British Gospel Choir and young black cellist.

But the most important thing to me was that the couple invited people from all the charities they support and from all walks of life.  These included people from mental health charities to children taking part in mentoring schemes to injured servicemen.

And this is where we come to the legacy left to those two brothers by their mother Diana, Princess of Wales. She was the first to open her heart to AIDS sufferers, to children in Africa and to the effects of landmines in countries affected by war.  That open heart has been evident in her sons, no more so than in Harry and Meghan’s wedding.

All the talk amongst commentators, the newspapers and ordinary members of the public is of change brought about by the wedding, and there is no doubt about the change in Royal traditions.  But the real change has been brought about by Harry and his open heart, which in turn was brought about by his mother.  Luckily for him he has found a kindred spirit who opens her heart in the same way.  They have a fantastic opportunity to do good in the world.  I wish them luck.

Reflections

What a title – ‘reflections’?  Not exactly a draw-you-in type title is it? I’m useless at thinking  up titles anyway. Perhaps I should write first and title afterwards.  The thing is I wrote it because it was just what I was doing – reflecting.  Being confined to a wheelchair there is plenty of time to do it.  This morning we have sunshine at last so I can sit here in the kitchen with my coffee with the doors open and look out at my lovely garden (courtesy of the lady who lived here before us, none of our doing!). At the top of the hill in front of me is the local cemetery.  I can see a stone cross and various headstones. When we first moved here it spooked me, but now I regard it as a peaceful place. I have been persuaded by lots of my friends that that is what it is. So I’ve come round to the idea. My main thought this morning is I’m so glad I’m alive. Three years ago I was brought back from the brink of death by a fantastic group of doctors and nurses to whom I owe a debt of gratitude that is priceless beyond words.  Since then I’ve valued every second.  And I intend to go on as long as I can before I take the walk up the hill in front of me.

At the same time though, I know that there are many people in this world who do not have the opportunity to sit and reflect as I have done this morning. I’m aware of how much of a luxury it is.  I don’t feel guilty when I see a homeless person sleeping on a bench in my local town centre, that would be pointless.  What I do feel is just terribly inexorably sad.  I just want to give him a big hug.  But that would not help to get him off the street.

Is it alright not to feel guilty? It’s not my fault,  I think.  It may not be their fault either but a result of a chain of circumstances.  If it’s a systemic failure, which is my preferred option, then how can I, we, as individuals really contribute to solving this crisis.  I know this is endlessly debated, and many individuals do give their time and effort to try to change things.  I’m not saying anything new, only what came into my mind when I was ‘reflecting’.