house move – Another MS Warrior

138 Turn and face the strange

David Bowie * Changes

Here I am blogging from somewhere new, but not strange. My life, on the other hand, definitely feels strange. Last week I left my lovely little home and moved in with my brother and his family 125 miles away. This is a temporary measure, until my new bespoke park home bungalow is finally ready. Issues linked to lockdown, followed by Brexit, followed by further lockdown, have caused a delay, which I’m told could be anything from days to weeks to months. I am having to learn to be patient.

It has been a busy and stressful few months getting my house packed up into boxes, selling and giving away unwanted items and moving things to Niamh’s house for storage. This had to be quite a gradual process, given that I live on my own, am disabled and we are in the middle of a pandemic. Connor, Niamh, Sophie and Callum have been amazing – lifting and moving things, taking stuff to the tip and moving packed boxes for storage. We managed all of this whilst being as covid safe as we could – masks, hand washing, social distancing and ventilation. It wasn’t easy, but we did it … I’m so grateful to my little team of hard working helpers ?

By the end of February, I was beginning to feel as if I was camping out in my own home! Bare walls, minimal furniture, a few kitchen basics and a lot of making do, became my way of life. The whole experience of streamlining my belongings and living in a rather minimalist way for a while, really highlighted to me, just how much “stuff” we have, much of which we don’t really need (or is that just me?).

Unfortunately, my cats, Ziggy and Luna did not cope well with all these changes. Ziggy can freak out at a chair being in a different place, so you can imagine how he coped with every room constantly changing. He is also sensitive to loud noises and sounds of people moving about in another part of the house. I have no idea how I ended up with such a neurotic cat!

By the time moving day came, I was ready to go. My home no longer felt like home and my cats were on the verge of a nervous breakdown. As I haven’t driven such a long way for quite a while, my children offered to drive me, my cats, my car and my belongings to Herefordshire and deliver me to my new temporary home.

To add to the complexities of the day, I was booked in for my first Covid vaccine on the same morning. Perhaps not the best timing, but I am grateful to have been offered it so soon and continue to be thankful to all the scientists, medics and volunteers who have helped to get us to this point.

So here I am for the next few days/weeks/months until my new home is ready. I am settling into rural life and very much enjoying the peace and quiet. Anna and Zeb (niece and nephew) have already taught me the names of various garden birds and last weekend we had a picnic and found a rope swing … this doesn’t happen often in Stockport!

Whilst in the midst of all this sorting and packing, I have also officially informed work that I am not fit to return and have submitted my application to Teacher Pensions for their consideration (along with 5 pages of notes explaining how my MS affects my ability to work and 17 items of documentary evidence – doctors letters, hospital notes etc).

It has been an awful lot of change in a very short space of time, so perhaps it is no wonder I am feeling a little unsettled and out of sorts. I am also a little “homesick” for a home that no longer exists for me, which is hard to get my head around. When I bought my house, I thought it would be my forever home. I loved its quirky old fashionedness, the local community and location. When I started this job, I thought it would be my forever job! I loved the work and my team and my office was just three miles from my forever home. I was hoping to feel settled, to take time to get my house exactly how I wanted it, to focus on myself and to plan new adventures. But my MS had a different plan and decided to deprive me of both my home and my job all in one go. I have spent much of the last year feeling heartbroken about this, but am now starting to feel optimistic for the future, whatever that may be … I am turning to face the strange … and it’s ok.

Big thanks to Jimmy, Gill, Anna and Zeb for taking me in during my hour of need. Also thanks to William (the cat) who is now having to share his home with two neurotic visitors.

135 Updates – work, home, HSCT

Hello dear reader and apologies for my long absence. The last few months have been a period of much deliberation, discussion with friends, family and professionals, sleepless nights and general chaos. I haven’t always coped well with this, but it has led me to make an important decision in relation to work.

Before I explain further, I want to tell you a little about my job. I am a teacher and for the last 4 years, have worked with a team who support and promote the education of children who are in care (we are known as a Virtual School). The work is challenging, but very rewarding and it has been wonderful to be doing something that I really believe in. We are a team of just 13 and I am very blessed that each and every one of my team mates is a friend as well as a colleague. I remember reflecting a few months into this role, that it felt as if it was where I was meant to be … I was learning so much and really felt I was making a difference to children’s lives.

During the last 18 months, I have struggled more and more with work as my health has deteriorated. I have had many weeks off sick, recovering from relapse, fatigue and fall injuries. On several occasions I have fought my way back to work, to only be overwhelmed by debilitating symptoms within a few weeks. It has taken me a while to accept it, but I have come to realise that this situation cannot continue.

My headteacher and the local authority have been wonderfully supportive through all of this. I have reduced my work hours and had appointments with Occupational Health (OH), all reasonable adjustments have been agreed and put in place, but I can’t escape the fact that I am getting worse and working has become harder and harder

It is important that people with MS make good lifestyle choices and there is emerging evidence that those who live a healthier lifestyle do much better in the long run. When I’m not working, I manage to walk daily, do yoga, eat healthily, sleep better, meditate and to generally take better care of myself. Once I’m back in work, this uses up all my physical, emotional and cognitive energy and I’m not able to do all the things I need to do to keep myself well.

Neurology Professor Gavin Giovannoni discusses this issue in this blogpost (and in many others) … Barts MS Blog – Moving the Goalposts

So, I have made the difficult decision not to return to work and to pursue ill health retirement. At my most recent OH appointment, I was assessed as not currently fit for work, with no actions identified to support my return. My MS Nurse and GP are also in agreement and my neurologist will provide a supporting report. As you can imagine, I have been heartbroken by the realisation that I can’t manage any more, but I also have a huge feeling of relief that a decision has been made … and that tells me it’s the right decision.

I’m trying not to dwell too much on the sadness of the situation for now, but to look forward to a future where I can better take care of myself and live my best life. I hope I will feel healthier and will have more time and energy for family and friends. I plan to become involved with local groups and to do some volunteering in schools or with vulnerable children, as I still feel I have a lot to give. I’m hoping I can dip in and out of this and do as little or as much as fits with where my health is at. My work friends have promised to keep in touch and to meet up when we are finally allowed.

So, 2020 really has been a huge year for me … lots of staying home, thinking and making decisions. I will be moving house early in 2021 and am hoping to have a confirmed date on that within the next few weeks. With the help of Connor, Sophie, Niamh and Callum, I have made a slow start on sorting and packing my belongings. I’ll be so relieved when that job is finished!

HSCT has resumed at the clinics in Moscow and Mexico. The hospital in Moscow is only accepting patients from certain countries, as the Russian government is strictly limiting visas to enter the country at the moment. A few British MSers have had treatment this year and I am full of admiration of them for their determination and bravery. For a number of reasons, I am deferring making a decision on my treatment until next year at some point. I feel that having the treatment is as safe right now as it has always been, but I would be concerned about travelling home with a severely compromised immune system.

During the early weeks and months of recovery, it is vital to avoid infection and Coronavirus is a particular danger. Sadly, the HSCT team at Sheffield have had 2 patient deaths due to them catching the virus soon after treatment. These were cancer patients, rather than MS patients and the hospital have now stopped all but the most urgent treatment.

If I had treatment now, it would be necessary for me to totally isolate myself for some time afterwards. I wouldn’t be able have family and friends staying or even visiting to help me and I would need to manage everything at home on my own … including trying to maintain a scrupulously clean and sterile environment, whilst recovering from challenging treatment. Having already spent much of this year in isolation, I don’t feel I could face doing this for now.

We are not actively fundraising at the moment, but in the interests of transparency, thought I’d share where we are up to. The total collected stands at £28,531 and I remain so grateful and in awe of all of you who have contributed, attended one of our events or taken part in a sponsored activity.

You can check up on the page here … GoFundMe

The funds are not actually held by Go Fund Me, but are automatically transferred to a bank account, which is kept separately from my other finances. If we decide ultimately that HSCT has become too risky for me, I will offer to refund individual donors and contribute the rest to AIMS to support others pursuing HSCT.

Autoimmune and Multiple Sclerosis (charity)

If you’ve got this far, thank you for reading my waffle! I am very aware that I am not the only one dealing with difficulties right now, all with the backdrop of a global pandemic and harsh restrictions, which are getting us all down. There are, hopefully, better times ahead, so until then, do what you need to do to take good care of yourself and those around you ❤️

133 A few updates

Work

With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.

You can read more about Spoon Theory here … The Spoon Theory written by Christine Miserandino

My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …

Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).

I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.

House move

Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.

I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.

So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.

HSCT

HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.

I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.

I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!

I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!

Tecfidera (DMT)

I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!

Many thanks to family and friends for your continued support with all these ups and downs ?