home – Another MS Warrior

134 Falling

Paloma Faith -Falling Down

Falling, tripping, bumping into things, misjudging space and distance – these are all everyday occurrences for many of us with MS. Moving around, using stairs and walking through doorways require concentration and focus and it’s not always easy to maintain that level of focus, when most of your previous life, you didn’t need to! This is one of the reasons why those with MS are often fatigued – every day movement is exhausting.

The Fall – Hit the North

It can also make life a little risky. My arms and legs (and currently my forehead) are often full of mystery bruises from various incidents involving furniture and doorways. I’ve had a few bigger falls and many near misses – loss of balance or footing, or maybe legs refusing to work, but just managing to grab something (or someone) to stop myself falling. I find it quite terrifying!

Fallout Boy – Dance, Dance

A couple of weeks ago I had my worst fall yet and ended up having X rays and various examinations before being diagnosed with bruised ribs (and bruised everything else!). This fall happened in my own home, where I should feel safe and has really shaken me up. If I was having any doubts about moving to a stair free home at this point, those doubts are well and truly gone.

The Primitives – Crash

My house went up for sale a week later and sold for above asking price within a few days. I am very thankful that this was as stress free as it possibly could have been and my buyer seems lovely – she has already promised to love this house as much as I do ❤️

About 10 days after my latest fall, I suddenly developed severe vertigo. My GP and MS Nurse do not believe this is linked to my fall, but is more likely a small relapse. I have a had fleeting episodes of vertigo before but nothing like this – everything moving, nausea and vomiting and everything but sitting still and quiet made it feel worse. I am now awaiting another MRI and an appointment with the Community Rehab Team and have anti sickness meds to help me in the mean time. Thankfully, the vertigo is improving each day and I’m hoping it’ll soon subside altogether.

You can read more about vertigo in MS here … MS Trust – Vertigo

Thank you to friends and family for all your continued love and support on this crazy journey ?

132 Acknowledge, accept, release and let go

Yesterday on Facebook memories, this picture popped up and gave me a huge emotional jolt. It was taken in August 2016 on holiday on the Greek island of Santorini. It was a wonderful holiday … such a beautiful place, lovely fellow travellers and it was also the last time I felt truly “well”.

I’d had two MS relapses by this point and had fully recovered each time. At this time I was diagnosed as having had two episodes of Clinically Isolated Syndrome (CIS) and advised that a further episode was very unlikely. I’m not sure how two episodes can be defined as “isolated” and it doesn’t seem to fit with the information available online.

MS Trust: Clinically Isolated Syndrome (CIS)

At this time I was also at a point in my life when I finally felt things were going well in terms of my career and income. Back in 2002, I had become a single parent, following an unhappy marriage and very messy divorce. A few years later, I stepped back from teaching for less well paid jobs in order to have more time for my children (at this time I felt I had to be mother, father and grandparents to my kids, which didn’t fit well with working up to 60-70 hours each week as a teacher). This was the right decision for us and I have no regrets about doing it, but it left us rather short of money for quite some time.

By 2015, my children were both adults and well on their way to independence, so I’d gone back into teaching, working in a local authority team supporting the education of children in care. It was my dream job! My experience in the classroom and in child protection was put to good use, I was with a wonderful team of colleagues and I was back on a progressive career path.

My holiday in Santorini in August 2016 was one of the first proper holidays I had been on in years. I was feeling good, loving life and feeling confident about the future.

At the top of Nea Kameni, Santorini Caldera

A few weeks after my holiday, I had my third major relapse and have never fully recovered. This led to further investigations, MRI scans, lumbar puncture and eventually a diagnosis of Multiple Sclerosis. I’ve had a continual increase in symptoms ever since, with new brain lesions identified at each MRI scan. My next scan is in September of this year … please send positive vibes, in the hope that there is nothing new found. I need this disease to stop and to leave me alone to live the best I can, where things are now.

In 2017, I was doing reasonably ok in terms of mobility and moved to my current home, which I expected to be my forever home, in the Summer of that year. At last my life was settled … perfect job, happy home, kids doing great and I was earning enough to afford the odd holiday.

Then it all came crashing down. Three years on, I now find work an increasing struggle and have had to reduce my hours and miss out on promotion. I live in constant fear of falling down my stairs and no longer even try to get things from the cellar. My house is going up for sale again soon and I’m heartbroken. But I need to live safely and try to find a way to manage, if I need to cut my hours further.

I’ve had counselling recently, which has helped me to see that I need to allow time for myself to grieve and mourn for all that I’ve lost, as I’ve mostly not allowed myself to do this. Then I need to accept things and move on. I’m a naturally positive and cheerful person, but in some situations this doesn’t help … I think my positive, ”just keep swimming” approach has got in the way of me being able to mentally process everything.

I’m still doing daily yoga (except on those exceptionally hot and humid days we’ve had recently) and finding this a huge help mentally and physically. My current mantra is …

I’ve managed to see a few friends recently, which has really lifted my spirits, but as the threat of a second wave of COVID 19 increases, I am starting to be more careful again and I don’t think it’ll be long before I’m back in lockdown, even if the government isn’t saying we should.

I hope you are all staying as safe and positive as you can, while all this is going on around us ❤️

113 Reflections

I always struggle a little at this time of year. I guess we all tend to become a little reflective at this time, looking back on what we have achieved, or otherwise, in the last 12 months. What aspects of our lives have improved and which have become worse? As well as this, it tends to make me reflect on life in general and to notice the passing years and wasted time.

During the last year I have reduced my hours at work – this is the first time in my life that I have ever been a part time worker. This was definitely the right decision for me, although my MS has progressed further, to an extent that I’d probably benefit from reducing my hours further. Unfortunately my finances don’t allow for this at the moment.

The last few months at work have been particularly challenging and by the end of December my symptoms were so overwhelming I was forced to take some time off. I am back at work on Monday and although looking forward to seeing my work team and getting back to”normal”, I have a lot of worry about whether I can cope. Unfortunately this worry is disturbing my sleep, contributing to my fatigue and making me feel worse!

I had a telephone appointment with an Occupational Health nurse in December – she was supportive and helpful, but overall, I’m not sure I gained much from it. She has made some suggestions about changes, or “reasonable adjustments” that could be made to support me at work, but none of them really solve the problems I face. The building I work in is not disability friendly at all and I don’t think there’s much I can do to change that. At a time when public sector workers are under a resumption of pressure, austerity measures and huge workloads, there’s no way I can reasonably request to do less.

On the plus side, I am now receiving the Daily Living Standard Rate PIP (Personal independence Payment), for which I am very grateful. I also have an appointment this week with an Occupational Therapist from the Community Neurology Team, to provide advice and see whether there are any adaptations or equipment that could help me at home.

This time last year, I was managing well in my little house. I live in a small 130 year old terraced house, with an exceptionally steep staircase! Friends often comment on how steep it is, with very narrow treads, but I’ve been determined to push through and keep using them. Over the last year, the stairs have become more and more challenging for me. Going up, I feel reasonably safe and usually climb on all fours. Coming down is another matter altogether!

I fell down stairs (from about half way) a few weeks ago and since then, do not feel safe when coming down the stairs. I have been thinking for a while that need to move to a bungalow or a flat and my recent experience has confirmed this for me. I feel very sad about this …I love my little house and I love where I live …but I need to feel safe and independent.

I have a personal Instagram account and as usual asked the #BestNine app to find my most popular photos of 2019. This year my life seems to have consisted of family and finger nails! Where are the nights out, the holidays, the weekends away? Where are the day trips, visits to galleries and exhibitions? Where are the cocktails and journeys on the 192?! Where are the gigs and festivals? Where are the protest marches and rallies? … I want to go back to my old life …fuck you MS.

If you’ve read this so far, thank you for indulging me. I know I sound like a whinger and I promise I’ll snap out of it soon! I have much to be thankful for and when I reflect on 2019 with my positive glasses on, this is what I find …

My wonderful children and their equally amazing partners ????‍?‍??
My fantastic brother, sister, their partners and children ❤️
My wider family ?
My kind, supportive and loyal friends ?
A job I love with the best ever colleagues ?
My beautiful cats! ??
My little house and my local community ?
I can walk and talk and take care of myself ??‍♀️
I have a plan to improve my life … HSCT here I come! ?
The amazing support and efforts of family, friends and strangers alike, in helping to raise the funds needed to pay for my treatment ??

Happy new year everyone!

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