I started writing MS Calling exactly a year ago, it seems like it's been so much longer than that, but it really was 12th November 2015. MS Calling: A bit of an Introduction
Looking back it's clear that I was hoping to keep the MS as a part of my life and therefore I started another blog to keep all talk about MS at a distance. But what's become clear over the last 12 months is that MS is part of me, and that it will have less control over my life when I accept that it's part of who I am.
In reality, MS has been part of my life since I was 17 (possibly longer) but because I never had a diagnosis for all the crazy things which I used to experience I just got on with it. Well guess what - I'm just going to keep getting on with it - after all I don't have any other choice.
What this means for blogging is that I'm bring MS Calling back into the fold and taking it under the banner of LLM Calling. I haven't entirely figured out how that will work for the existing posts - because I don't want to loose the posts which I have written over the last year - but I am sure I will find a way.
All new posts I write about my life, no matter what they refer to, will be at LLM Calling - that's everything from parenting to marriage, from faith to politics, in poetry or prose, from physical to mental health, from birth through to death.
Everything together, accepted as part of the whole.
Come and find me soon.
Into London with the family to the see through sound concert raising money for RNIB.
This is a big deal.
A really big deal.
It involves a lot of different forms of transport which all cause pain in different ways; new places I don't know and so can't see in my mind; decisions on the fly which are not easy with disability; anxiety about how it will be and excitement to be going.
We're staying overnight in London at a budget hotel which Rachel thinks this is an amazing treat. But in reality it's because neither Mike or I think I'll have the energy to cope with getting home late in the evening. And besides, who doesn't love a cooked breakfast in the morning. But even that will take a lot of energy.
In all, this trip will take a couple of days worth of energy, possibly even a week's worth. It's not like it used to be, or like it is for most people is it? But it's possible to do and it's worth it.
To pull this off, the whole week around today has been planned to the smallest detail. And here, with the help of cat photos, is what today and tonight will look....
Stay in bed lying down until 11am
Keep my feet up until 2pm when we leave
Stay as calm as possible, allowing Mike to take control of the travel
Lie down at hotel for as long as possible before concert
Enjoy the concert without embarrassing Rachel
Sleep as late as possible tomorrow morning
Come home, possibly after finding some Pokemon,
depending on how I feel and how sight, pain and fatigue are doing
Hopefully that'll mean fun for us all and I won't end up in a crazy mess.
Time will tell.
Watch this space.
Cat photos taken by Inge Wallumrod and used under Creative Commons License.
A friend posted this bucket list on Facebook today and I was at a lose end so decided play along.
Been Married x
Fell in love x
Gone on a blind date x
Skipped school x
Watched someone give birth x
Watched someone die x
Been to France x
Ridden in an ambulance x
Been to America x
Been to Europe x
Been to Blackpool x
Been to Liverpool x
Been to Newcastle x
Visited Disneyland x
Visited Legoland x
Seen Grand Canyon x
Flown in a helicopter x
Been on a cruise x
Served on a jury
Danced in the rain x
Been to Manchester x
Been to Edinburgh x
Played in a band x
Sang karaoke x
Made prank phone calls x
Laughed so much you cried x
Caught a snowflake on your tongue x
Had children x
Had a pet x
Been sledging on big hill x
Been downhill skiing
Been water skiing
Rode on a motorcycle x
Traveled on a bus, train and coach x
Jumped out of a plane
Been to an outside movie x
Rode a camel x
Rode a Donkey x
Been on TV
Been in the newspaper x
Stayed in the Hospital x
Donated blood x
Gotten a piercing x
Gotten a tattoo x
Driven over 100 mph x
Been scuba diving
Lived on your own x
Rode in the back of police car x
Got a speeding ticket
Broken a bone x
Gotten stitches x
Travelled Alone x
--------------------------------
Apparently this is a UK Bucket List and it seems I'm doing quite well. But the thing is, I still don't get the point.
Why do I want to write a list of things to do before I kick the bucket? And, do I really think that the things I could write down will ever be things I'd look back on with regret if I failed to tick them off?
Well no, but then again, yes. But in a very different way. The list would be less about things and places and more about people and love.
Don't get me wrong, I really want to go to New Zealand; but since becoming ill it's not because of the place any more but more that I'd love to be with Rachel and experience her joy of a trip.
It struck me today, when I was eating on my own, that I can't really see my food any more.
I don't mean that my eye sight had suddenly got worse, but just that I noticed it in a new way today. And it occurred to me that I now seek out food which is varied in colour and texture (which is healthy so not one of the worst side effects) so that I can at least try to differentiate between the elements with my remaining vision and cutlery.
I feel my food more than look for it; I try to get a variation on my fork, rather than select specific items; and so far it's mostly been OK.
Interestingly I've become much less interested in meat; it doesn't look appealing really, where as fish smells lovely and is easy to eat. And add in the fact that it's often difficult to cut, which means I need someone else to do it for me because of pain and/or weakness in my hands and it's appeal drops through the floor.
I don't think I've ever really looked at my food very much, which is no doubt related to my eating disorder; and I've concentrated on conversations at meal times, but today I was eating on my own and so it was obvious.
But it also became clear that I'm less influenced by the sight of food and that I'm eating less, I'm actually not interested in it. I used to get a drink and see food in the kitchen and feel hunger and need to eat, well that's no longer possible and so I'm eating less.
I'm not sure what this says really, but it's interesting to me that my emotional hunger has all been sight led.
Anyway, that was my thinking at lunch today, interesting changes happening.
A month ago my folding electric wheelchair arrived from Better Products for Disabled People. I invested my back dated Personal Independence Payment into this purchase after finally agreeing with Occupational Therapists that an electric wheelchair would broaden my life beyond what I could enjoy with my mobility scooter.
I tried lots of different electric wheelchairs before deciding to ask for a trial of the BPDP10J but all of them had one major drawback, they wouldn't fit in our car, let alone in a smaller car. My goal for the electric wheelchair was to get out and about more with friends in their cars and for work using taxis; but the conventional power chair market had nothing which could help with this. It was the folding aspect of the BPDP10J which appealed to me and made it something worth trying.
I emailed BPDJ and spoke to Shaun who said he had a customer who would happily bring his wheelchair to me to try. Within a few days Alan and his wonderful wife arrived at my house with his BPDP10J wheelchair, unloaded it, opened it and invited me to have a spin. I couldn't believe how easy it was for Alan to get the wheelchair out of his car and was amazed by the simple way it opened up ready for use. I had a slow, and then quicker, spin around the close outside my home and was sold almost straight away. My only concern was that the footplate was small and meant I couldn't get my legs comfortable, which I knew would become a major issue with my MS pain. Alan said that BPDP were looking at making larger footplates and I should speak to Shaun, which I did who said he would make it happen for me, no problem at all.
I can not overestimate the benefit of speaking to someone like Alan who is also disabled and seeing the chair in action; or the positivity of Shaun at BPDP in every conversation we ever had and the way he completely understood what my issues were and what I needed. I was concerned that I would be getting the first of the newly designed models, but was reassured that they would make sure the chair would be altered to meet my needs. I was safe in their hands.
The worst part of the whole experience from enquiry to trial to order to delivery was the wait to get the 10J model; it seemed to take forever to arrive from China and make it through customs. But it was worth the wait, which actually was less than 3 weeks, to have the first of the newest specification models with the larger footplate; it is wonderful.
Over the last 3 weeks I have tested the BPDP10J all over the place. I started around the house but quickly decided I needed a larger space to practice my turning skills, especially my reversing. I think this was as much to do with my hand eye coordination, extremely minimal eye sight and confidence than anything.
We decided that the best place to go would be our local supermarket and I put a warning on Facebook for everyone so that they knew the yellow peril (Alan named us thus) was on the move. I know the store well and have taken my mobility scooter there quite a few times and therefore this was a good place to compare and contrast as well as try out the BPDP10J maneuverability.
Mike and I were both really impressed with how little space it needed in the boot of the car. It could probably fit behind a front seat if no one was in the back, but we haven't tried that out. In the supermarket I was shocked by how much better it could get round obstacles and corners, it literally turns on a penny if I get my hand eye coordination sorted. It can get through much smaller spaces and is much smoother as well as a much more comfortable position, leaving me less tired and therefore more able to cope with the other MS symptoms. The yellow colour did nothing to help people see me, but I've decided that that's as much to do with being lower and disabled people being invisible than anything else.
I took the 10J to a garden centre, a local coffee shop, to a restaurant, to the theatre, to a scouting meeting and to church over the next few days and the only problems I encountered were that it doesn't cope so well offroad and that everyone wants a go!!
Then this past week we have been on holiday in Lancashire. We were staying in a beautiful cottage in the countryside and we took both the mobility scooter and the BPDP10J. The plan was to use the mobility scooter around the farm and anywhere with offroad type elements; and use the wheelchair everywhere else. Over the week I took it all over Blackpool with great success along the promenade, across tram tracks, down the piers, through arcades and shops and into restaurants;
around Manchester city centre and across to the old UMIST campus;
to a number of different restaurants where it was always the most comfortable seat in the place; and I even got down to the lamb pens on the farm which I really didn't expect to manage.
So, in case you haven't guessed, my verdict is that the BPDP10J is brilliant. It fits in pretty much any car, it goes on for miles and miles, it's really comfortable and easy to use and it looks cool too. I won't use it for a walk in the woods, but pretty much everywhere else it is my wheels of choice.
9/10
I have received no remediation for this review, but Better Products for Disabled People have made a £100 donation to the MS Trust in my name.
Below I have provided a video of the BPDP10J in action along with some of the specifications.
BPDP10J Spec:
Folding size 590×325×780mm
Unfolding size 975×590×935mm.
Loading capacity of 180 kg.
It can reach to 6km/h with a driving range of 25 km.
10J can climb up to 12°.
It weighs 24 kg (without batteries) and 27 kg (with batteries).
It has a seat width-depth-and height of 480mmX430mmX460mm.
Most of you will say, yes. But many of those who are visually impaired can not read the word. This is because they need to use screen reader software to "read" for them and this software has enormous trouble reading images.
I am lucky, I can use my zoom software to make the image as large as I like to read the word. And I thought I had made it clear enough that it would be accessible to everyone.
But I was wrong.
We all need to better understand what it means for our websites to be accessible.
This morning I read a wonderful article on The Mighty: When I Saw the Adventurous Life I Envisioned Before My Illness Slip Away which spoke a great deal to how I can feel at times. I recommend that you read it for yourself, but in brief, it speaks of a young woman diagnosed with a chronic illness who is having to come to terms with changing her plan for a life travelling the world. There are days when I can let myself think like this, and these were almost every day in the first six months after loosing my eye sight and realising my mobility problems were not a temporary blip; but most days now I think differently.
My Travel Plans (as were)
I will see everything there is to see in the world; all the amazing sights and people and cultures and buildings and natural wonders.
I will stand on Antarctica and walk in colonies of penguins; drive an RV through New Zealand and see the land of giants; watch the sunset over deserts; trek through forests to see orangutans; worry about bears in Alaska and time eruptions in Iceland; see the Northern Lights and watch dolphins and whales time and time again; try disgusting food because it's better to have tried and disliked than never to have tried it at all.
It was all mapped out, every square inch of the planet a place to be seen and explored and captured with my camera and shared with Rachel and Mike. It was a life full of adventure and fun but absolutely no bungee jumping!!
My Travel Plans (as I grieved)
There's no point in even trying to go to any of the places I have always wanted to see, because I can't see. There's no point in expecting to trek through jungles or take a boat up the amazon, because I can't trek or even get on a little boat let alone sit in it for hours. There's no point planning to see the Northern Lights because they're subtle and will not be bright enough for my little sight to pick up, and I will be too tired by the evening to be able to cope with the trips anyway etc etc. A spiral of can nots and will nots and impossibilities for the future.
but......
I have come through the grief (I'll be blogging about how that happened) and now .....
My Travel Plans for life
I will experience everything I possibly can in the world; all the amazing sights and people and cultures and buildings and natural wonders. I will find ways of travelling which make it possible; we are trying cruising this summer to see how that works for me. I will meet people from different cultures and enjoy their company because it's always been more about their stories than about what they look like. I will visit the natural wonders and I will hear through Mike and Rachel what I can not see and we will take photos and I will use technology, there at the place, to see it the very best way I can. I will open my ears and hear the waterfalls; I will touch the rocks and the ice of the glaciers and I will feel the wind and spray from the sea. I will feel the joy of those around me and my own as I travel with loved ones and place memories in my heart.
I might be in a wheelchair, or scooter, or perhaps in a funky off-roading contraption and I will find a way. I might need assistance, but we all need assistance from loved ones or experts whenever we travel, it's just a different form of help.
I have it all mapped out and it's the whole world. I will see as much as it's possible to see and I will see it with the whole of me; I will experience it as me and it will be awesome. No disability is going to stop me, my only limitation is money and let's be clear, that was always the limiting factor but it doesn't matter in dreams and plans for the future.
Welcome to the #TreasuredMoments link-up. The place to share treasured moments in poems and blog posts. This time the linky will last two weeks until 26th April 2016 and I'd especially love to see your posts about Bloom.
Spasticity
Spasticity is a symptom of multiple sclerosis
Spasticity
pretty new to me
started this year
leg locked
couldn't move it at all
terrified
shoulder stopped
is it a heart attack? no
different spasm
have to be ready
pray that it stays rare for me
not my favourite Spasticity causes your muscles to feel stiff, heavy and difficult to move. A spasm is a sudden stiffening of a muscle which may cause a limb to kick out or jerk towards your body.
Regular relaxation is really important to manage the symptoms of MS.
Stress is a trigger
it makes my MS symptoms
so much worse
Overwork
exhausts me causing
pain and fatigue
I must rest
Take time out regularly
Relax
Not easy for me
I've never liked to rest
But it works
So I'm learning
to relieve tension, chill out
put myself first
Regular relaxation can help you decrease tension in muscles, lower your blood pressure and slow your heart rate. Relaxation can help with fatigue as it promotes good sleep patterns, increases benefit from rest periods during the day and can help to manage stressful situations.
What is causing this symptom?
Will it improve or get worse?
Will this symptom stay forever?
Are there any treatment options?
Are there likely to be any triggers which set it off?
What can I do myself to manage this symptom?
What shall I do if my symptoms get worse?
What shall I do if I experience new symptoms? Possibly the hardest thing is dealing with the huge list of questions which pop up between appointments; especially if you turn to the internet and find lots of conflicting information. It is important to find a trusted source of facts, such as the MS Trust, and share what you are reading with a close friend or relative to help them help you understand.
