work – Another MS Warrior

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 ?

130 Hello again

Hello everyone ?

Here I am, starting another blog post with an apology! I’m sorry there has been no update for over 7 weeks. They have actually been quite tough weeks for me … I have been unable to work and have kept my circle very small, in order to cope (just close family and a few close friends).

Looking back, I now realise I have been going through a period of adjustment. My whole life was geared towards going to Russia for HSCT on 16th March and it has taken a while for me to come to terms with this being cancelled, at just a few day’s notice. Not knowing when, or if, I’ll eventually get there, is a difficult position to be in. I’ve had a deterioration in my walking over this time too, increased problems with my left leg, as well as increased joint and muscle pain. All this has been going on while we have all been living in very strange times indeed … no wonder it all became a bit too much.

I reported in my last post that I was soon to start two new treatments … one to hopefully improve fatigue levels and one to hopefully reduce MS disease activity.

I have had no side effects or issues at all with Amantadine and a slight improvement in fatigue levels, so will be continuing to take this daily.

I’ve had a slightly bumpy road beginning Tecfidera, with flushing, burning and rashes most days. Thankfully, this is reducing each as time goes and is now just about manageable.

I returned to work today and am pleased to report that everything went well. I’ve had great support from my head teacher and my team, who have kept in touch during my absence. I have a desk set up at home, with a lovely view and am looking forward to getting on with things.

I’m trying not to think too much about HSCT and whether it will ever feel safe to go ahead. I think it’s going to be quite a while until that decision can be made.

128 Where am I up to?

Isolation day 47 and I can no longer remember my old life! This has been the strangest few weeks any of us have ever known and I think it’s beginning to take its toll. What did I used to eat? Does the rest of the world still exist? What’s the cat trying to tell me?

I’ve had numerous conversations with friends and acquaintances who are experiencing sleeplessness, exhaustion and nightmares! I don’t often remember my dreams, but I sure do know how they are making me feel at the moment. I’m waking up most nights (that’s after spending a good couple of hours tossing and turning trying to fall asleep in the first place) feeling panicky, scared and stressed after a bad dream. Apparently we use our dreams to process our thoughts and feelings, so if you consider how much change we are now living with, it’s not surprising we have a lot of anxious thoughts to process! I hope someone is doing a study of this somewhere, as it’s actually quite fascinating ?

I sometimes use a meditation App called Calm, to help me relax and to get off to sleep. I’m still using it, but even that isn’t quelling my general anxiety. It is quite comforting to find that lots of us are experiencing this difficulty at the moment, but I do worry about how this will impact us in the long run.

As well as dealing with life in lockdown, missing family and friends, worrying about loved ones and about the planet and wondering whether Vodka can really be classed as an “essential item”, I am also experiencing an upturn in my MS symptoms, as well as the disappointment and implication of the cancelling of my treatment.

I’m not going to talk much about my MS issues here, as I plan to log a full inventory of my current symptoms in another blog post at a later date.

As you know, I was all geared up to fly to Moscow on 16th March, to stay for a month to have HSCT to treat my MS. It was a long and difficult journey just to get to that point – 2 years of fundraising, lots of stress, visa applications, flights booked then changed and lots to prepare for my time in Russia, my journey home and making the house safe for my return. When anyone mentioned a time in 2020 that was beyond the 16th March, it didn’t really exist in my head. My whole life was geared up to getting there and getting it done! ??

It was Thursday 12th March when I heard that the hospital was having to put new restrictions in place, which ultimately led to me postponing my treatment. It was a really tough decision but ultimately it was the right one. If I’d gone to Russia, I might not have been able to get home and My COVID fear would have been through the roof. Life may be challenging now, but at least I’m safe as I can be, in my little house with my 2 crazy cats.

Luckily my flights were cancelled by the airline, so I should be able to get my money back … I’ve been trying to get through to them for 7 weeks now, with no success (unless you count sitting in a 2 hour telephone queue success). I’m hoping that will all got sorted out eventually.

I had already sent the payment to the hospital for my treatment, a complicated international money transfer, but there was a delay in it getting there, due to everywhere beginning to shut down around that time. It arrived eventually and the hospital sent it straight back, but it hasn’t got to me yet. I’m told it’s somewhere in transit and not to worry (but of course, I do!).

I had to let my GP know that I was still at home, then my neurologist and the team in Sheffield. I am due for a further MRI scan in Sheffield as soon as it is safe to travel there. Theoretically there is still a very slim chance I could be accepted for treatment there, so it’s certainly worth me pursuing this.

I had a neurologist appointment in Salford booked for the 5th May and an MS nurse appointment at Stepping Hill booked for the 28th April. I was notified that both would be telephone appointments and then later notified they were cancelled. I’ve had a new neurologist appointment arranged for April 2021!!

Chronic illness is an area where our health system struggles. Most of the neurology team that I have met are hardworking, dedicated experts in their field, but they are so poorly funded and have to spread themselves so thin, that they struggle to provide an adequate service. Phoning and demanding to be seen usually works, but it shouldn’t be this way and I find it exhausting and frustrating.

I went back to work around the time that lock down was beginning and was working from home. At first it felt good to have something else to think about and to have that contact with colleagues. But as time went on, I started to struggle with increased pain, fatigue, brain fog and anxiety, so have made the difficult decision to stay off work for now.

So, where am I up to? Will I ever have HSCT?

The answer to the second question is that I really don’t know. The situation we are now in has really frightened me. There is no treatment for COVID 19. In severe cases, all the medics can do is treat symptoms and do all they can to keep you alive, whilst your immune system fights the virus. The immune system remains compromised for quite some time after HSCT and it can take 12-24 months for it to return to normal. If I were to catch the virus during that time, particularly in the early weeks and months, this would be very risky indeed.

Most clinics offering HSCT currently have their treatment programmes on hold because of this and there has been no treatments started in the UK, Europe or Russia during the last few weeks. Initially the clinic in Russia offered me a new date in July, but I don’t think it will be safe enough for me to do it then and I’ve recently heard that they are possibly closing until at least September. Looking forward, it’s hard to see a time when it will feel safe enough, with concerns about the journey home, particularly frighting.

So, everything is in limbo and I’m just doing my best to live with it!

Stay safe everybody ❤️

125 Isolation

What is this strange world in which we are now living? Nothing is as it was and it’s very unsettling.

This has been a really tough week for many of us and I hope you are managing ok and doing all you can to keep yourself and others safe.

Last Monday, I should have been flying to Moscow for HSCT. I’m so disappointed to not be having my treatment and the emotional shock of this change has been very difficult. For me and my family, everything has been building towards that day and that one aim, so it knocked us for six when it didn’t happen.

As we have moved though the week and the threat of CV19 has increased, and all the necessary restrictions have been put in place, I have become increasingly thankful to be at home and to be feeling relatively safe. The thought of trying to travel home from Russia in this situation really scares me … so I’m going to sit this out and see what happens when life gets better for us all.

I spent most of Monday and Tuesday in a state of emotional shock about this big change, with the rapidly evolving CV19 situation as the back drop. On Wednesday I had a telephone appointment with one of Professor Sharrack’s team in Sheffield. I have to say that this was the best neurology appointment I have ever had! He really took the time to ask me how I am, what has changed since my last appointment and how my symptoms are impacting on my life. He was also pleased to find that I was still here and not planning to go to Russia anytime soon. I’m not sure what my rights are to choose my own consultant, but I intend to find out and choose this one if I can.

The upshot of the appointment is that I should have had a brain and spinal cord MRI in January and no one seems to know why it didn’t happen. So, I am to be referred again and will have a further consultation when the findings are known. Obviously I have no idea when this scan might take place, but at least I’m still in the system somewhere! I was also informed that the hospital in Sheffield have suspended their HSCT for autoimmune diseases because of the risks presented by CV19.

There was another devastating blow this week when we realised that the Swan Brewery head shave and Bald Eagle beer launch event cannot go ahead. Jimmy and Gill have worked so hard for this and are now having to work doubly hard to protect their small brewery business from the current crisis.

If you are in the Leominster area and would like some good beer as an occasional isolation treat, check out their collection or drop off options here …

Swan Brewery

On Monday, I discovered that both Niamh and I are on the government list of vulnerable people – me because of my MS and Niamh because of her asthma.

I decided I need to “socially distance” and self- isolate as much as possible ..something I found very upsetting and depressing to begin with. On Wednesday, we made the decision that we should not be together. Niamh lives part of the week with me and part of the week with her boyfriend, Callum and from now on, will be living at Callum’s. It was incredibly upsetting for us both when she came home after work to collect a few things, blow kisses and say goodbye from a distance …but it was the right thing for us to do.

Yesterday Niamh dropped off a food parcel after work. I thought I’d feel upset and it was hard not to hug her, but it really did give me a boost to speak to her and to see her in the flesh.

On Thursday I went back to work. When I say “went” I didn’t actually go anywhere at all, but worked from home. All of my team have been working from home since Tuesday and both my employer and team manager have been amazing at ensuring everyone is safe and able to work. We have a work WhatsApp group and are keeping in constant touch with each other, which is great. I didn’t want to go to the office at all, so a colleague collected a few things and brought them to me and we even managed a short socially distanced chat, with me on the door step and her on the pavement! It’s good this is happening at a time when there is a break in the usual rainy weather! Thank you Jan and lovely to see you ?

On Wednesday evening, the government announced that schools in England would be closing to most pupils from Friday afternoon. It’s actually incorrect to say that schools are closed – most are, in fact, open and will be providing care for the children of key workers as well as those who may be vulnerable. I work with children who are in care and who automatically come under the vulnerable heading, so it’s been a hectic couple of days trying to ensure everything is in place for them as it should be. The task was made more difficult because of both the lateness and vagueness of government directions and the variety of ways in which these were being interpreted.

Most council staff who are able to work from home are now doing so and our IT systems weren’t designed for this level of remote demand, so there have been challenges, but we are doing our best.

All in all I have enjoyed being back at work. It has been good to have something different to focus on (other than on myself!) and to feel I am doing something useful. I am absolutely exhausted though!

I’m glad it’s now the weekend and plan to catch up with friends and family via Skype, messenger, Facebook, whatsapp, text and good old fashioned phone call. How would we have ever coped with this situation without technology and access to the online world?! I’ve even been invited to a virtual pub lock-in!

I also plan to make some lists of things to do whilst at home and create a bit of a timetable for myself. I definitely function best with a bit of structure and purpose in my life. In addition, I will be reviewing my food situation and having a stern word with myself … if I continue as I am, I may well avoid the virus but I am likely to become a very fat alcoholic, which I’d also like to avoid.

The government and NHS websites are being updated regularly with advice and guidance on what we should all be doing to protect ourselves and each other and I am also checking various MS/CV19 pages too …

NHS COVID-19 page

Coronavirus (COVID-19): what you need to do (Government page)

MS Society COVID-19 page

Professor Gavin Giavannoni’s MS and COVID-19 Microsite

So this is my life for now. Living and working in this little house on my own, with two crazy cats for company. I hope to keep in touch with the people who matter to me and I hope to get myself into some sort of routine that also includes time outdoors. I am dependent on others to do my shopping and bring me what I need …this doesn’t sit easily with me but I’m going to assume that no one will offer help unless they genuinely wish to provide it. There is an amazing local community group emerging where I live, offering all sorts of help, home deliveries etc. so I’ll be making use of that too. Most human beings are fantastic in crisis! (We won’t mention the virus deniers and panic buyers for now!)

122 Two weeks!

It’s just over two weeks until I fly to Russia and I’m feeling every emotion going! I’m scared, excited and slightly panicked, but mostly positive and optimistic. There seems to be a lot to do at this late stage …stuff to buy for the journey, stuff for being in hospital for a month and more stuff for when I get home. I’m in almost daily communication with the clinic and finalising visas, transfers, contract and payment …it’s all go! And it’s all stressful!

I went back to work on Monday after the half term break, but my head was all over the place and I struggled to keep focussed. I care about the work that I do (supporting children in care to achieve in education) and it concerns me a lot when I’m not able to do it to the best of my ability. I saw my GP on Wednesday and she advised me to stay off work for the time being. It feels strange to not be in work but I think it’s the right thing to do.

It was strange talking to my GP about my final plans for treatment. Obviously I have been talking to her about HSCT for a long time and she has been very supportive and encouraging, making the referral to Sheffield and discussing my options at every stage. Officially, she can’t fully support my decision to go to Russia and I sensed I have put her in quite a difficult position. She has seen my decline over the last couple of years and understands my decision to take action.

My GP’s main worry is my safety on the journey home. At this time I will be recovering from a pretty gruelling treatment and will have a suppressed immune system. I know my family are very worried about this too. I have done everything I can think of to minimise the risk …

For the first time ever, I will be flying business class on the journey home, with a stop off in Frankfurt (in the business lounge!) on the way. I’ll be very careful about what I eat and drink. I plan to wear a mask, wipe down with disinfectant wipes everything I will have contact with, to wash and disinfect my hands often and to keep them away from my face. My GP suggested keeping as far away from other people as I can. Many others have done this journey before me and I’m confident I will be just fine.

In the current era of the Corona Virus, there is much discussion everywhere, about hygiene and infection prevention. I saw something on TV the other day about hygiene when travelling. Apparently the dirtiest item you will touch when flying (in terms of bacteria and viruses) is this …

I suppose everyone puts their personal items in there, including shoes, bags, coats they have just taken off, contents of their pockets etc …and I don’t suppose they are ever cleaned! I’ll be thinking carefully about how I put my things in the tray and will use hand sanitising gel straight after.

Airport Security Trays Carry More Cold Germs Than Toilets, Study Finds

Yesterday I had my nails done for the final time before I go. I decided to go for it with the colour …

My lovely friend, Katy from Seed Beauty always does a good job with my nails and although she may not know it, has been a brilliant support over the last few months. She will be devising a facial / bald head massage once I am well enough when I’m home!

Arrangements for our tea party on 7th March are well in hand and we are all looking forward to it. If you are coming and haven’t yet paid, please get in touch with one of us. I’m looking forward to seeing lots of friends on the day. I want to send a big thank you to everyone who has helped in a host of different ways, to make this happen …I am forever grateful.

GoFundMe

PayPal pool

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!

GoFundMe

110 Ups and downs

Well it’s been another week of ups and downs here at Warrior Towers. After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday. It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education).

Unfortunately, by lunch time, I was struggling. The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.

By the afternoon, I was struggling to follow conversations and to process information. “Brain fog” is a real and frightening symptom commonly experienced by those with MS. The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.

I went home on Monday and cried. Never have I felt such a failure …and a fraud. I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.

I decided not to go to work on Tuesday. My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.

Like all of those working in the public sector, we are over stretched and under staffed. I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job. Thank you to my wonderful team for everything ?

I have spent the week mostly resting and not doing much at all. The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me! I have managed to relax a little and to live in the moment rather than worrying too much. I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level.

On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified! Small things, but both lifted my spirits immensely. Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.

A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once. I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet. I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future. I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job. With all these phone calls and appointments, being unwell is becoming a full time job!

Today, I received a letter from the DWP. I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment. With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP! I am delighted with this outcome. For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive. I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall. So the week has ended on a positive note and I’m very grateful.

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Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago. Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.

The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund! Jimmy is currently sporting a rather impressive beard and this too will be shaved off! To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.

This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village. Thank you so much to Sheila and Alan for their support. I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.

The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund. They have been persuaded to delay this until spring, when the weather will hopefully be more favourable. More info on this at a later date.

Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.

We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail.

Read more about MS “Brain Fog” on the MS Trust website here … MS Trust

you can find out more about the Calm app on their website … Calm They are also on social media.

You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).

Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).

Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).

Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).

Thank you once again for your ongoing support. The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?

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102 Multiple Sclerosis and work

Having MS is very expensive. I live in the UK and am lucky that most health services are free (paid for via our National Insurance and Income Tax contributions). But there are lots of additional hidden costs for those with a chronic progressive illness.

In January, I felt forced to reduce my working hours from 5 days to 4 and of course, took a corresponding drop in my income. This was the right thing to do and I’m grateful that my employer was able to support my request. But nine months on, I am struggling. I continue to find work an exhausting challenge and now I’m on a lower income, I’m worrying more about money too. I’d really like to reduce to 3 days, but definitely can’t afford to. Holidays, weekends away and regular evenings out are now a distant memory. When I’m not at work, I spend most of my time at home, on my own, recovering. How do people cope with this gradual decline, not just in their health, but also in their quality of life? I just don’t know how they do it!

There is very little financial help out there for people who find themselves unable to work because of their deteriorating health. I have recently applied for PIP (Personal Independence Payment) and now face the battle of fighting my case and trying to show how sick I am to government contracted assessors, employed by ATOS or Capita, with no knowledge or understanding of my condition. For some reason, this person’s view will be more important than my own accounts of life experience and the expert opinions of my GP, neurologist and MS Nurse. There are various levels of PIP and I’m just hoping I will receive enough to keep me afloat for now – it certainly won’t be enough to allow me to reduce my hours again.

I intend to write a longer blog post on my experience of the PIP process at a later date.

When you are diagnosed with MS, you are advised to reduce the stressors in your life, then they put you through a gruelling, time consuming and humiliating process in order to allow you to bring home enough to just about scrape by. When all of that and the grief of what you are losing every day really gets to you, they put you on antidepressants. There must be a better way.

I really want to carry on working for as long as I can. I love my job – I am a teacher but currently work for my local authority for a small team who support and champion the education of children who are in care. It is challenging, sometimes distressing, often rewarding work, with a high level of responsibility. I work with an amazing team of people, who are also my friends and I am fully aware of the support and benefits available to me as a public sector employee (although the building I work in is not disability friendly by any measure). There is evidence that, where possible, continuing to work is good for our mental and physical health. Maintaining routines, contributing to society, using and learning skills and connecting with others on a regular basis definitely contributes to wellbeing.

And yet the system doesn’t encourage those with chronic conditions to stay in work. Yes, there is entitlement to reasonable adjustments, help with getting to and from work and other schemes (such as PIP), however, there is nothing to replace lost income when you can no longer manage full time hours. My GP has already mentioned medical retirement …but I don’t want to retire! I want to work!

This article from healthline.com discusses some of the issues that MSers, with deteriorating health, face in trying to keep working.

“Data suggests that lost work productivity due to MS or the need to retire early is the largest single factor contributing to nonmedical costs of MS.

Loss of income is also associated with a corresponding increase in disability claims for governmental programs and insurance providers.

Nonmedical costs include short-term and long-term absence from work, reduced work hours, changing the type of work to a less physically challenging and stressful nature (usually at lower pay), and early retirement.

Although the costs vary by person, these factors result in reduced productivity and substantial income loss for those with MS.”

I’m going to do some more research on this topic, but in the meantime, here is my overall conclusion …

81 HSCT date change

This is just a brief post to let you all know that we have made the difficult decision to delay my trip to Russia for HSCT.

There are several reasons why we came to this decision, amongst others is the fact that we are still quite a way short of of our fund raising total. We have a few events coming up, so hope to make the most of those and increase our total over the coming months.

It’s been a difficult week or so, talking this through with family and friends, but I think we have made the right decision. I have been in touch with the clinic and they have been very understanding – I hope to have a new date in place very soon.

I’ve been feeling a bit down about this for a day or two but feeling much brighter now. A bit of a bonus to this delay is that the timing now works really well with my job. I work as part of the team who support and promote the educational outcomes of children who are in care. As you can imagine, many of our children have experienced difficulties in their lives, which disadvantage them in education and in life in general. We do all we can to support these children to overcome this disadvantage and to reach their potential. As you can imagine, it is hard not to become involved and to care what happens to them. In education, the Summer term is really important, with phonics screening, SATs test, Functional Skills exams and GCSEs. I have several year 11s and it will be good to now see them through their exams and know what their plans are for next year. I’ve also started working with nursery age children and look forward to some of them moving on to primary school. It will be so good to see them all through to the end of the school year.

So, I’m doing my best to stay positive and focussed and also to remain patient!

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