cats – 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.

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 😘

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 ❤️

126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold. What strange times for us all.

I’m going to keep writing, because it really helps me to do so. I don’t mind at all if no one reads!

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things. The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive. There are times when it’s really hard. My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it. I have lovely friends and family in my life and appreciate every single one of them. I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic. I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family. But sometimes the misery grabs me. I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true. Right now I am safe and I feel luck to be safe. I am able to carry on working from home and I have daily remote contact with lots of people. I know I am in a much better position than many are at the moment. I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me. I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live.

I am lucky to live close to a beautiful park and am visiting when I can manage it.

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live. This will be taking a toll on us, even on a subconscious level. When we are unsettled by change, it’s the stability of relationships that gets us through. But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter.

Apologies to anyone I have accidentally left out!

So, how am I managing my time?

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time. I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose. On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics. There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way.

Apologies to anyone offended by swearing 😊

I also have an important decision to make …do I cut my fringe or let it grow?!

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!)

118 Progress update

With just 5 and a half weeks until my trip to Russia, my travel plans are coming along nicely. My flights are booked and all necessary paperwork has been sent to the hospital ahead of my treatment. My transfers between the airport and hospital are booked and family are ready to transport me both ways at this end. The hospital is processing my visa invitation and I am hoping to receive this very soon.

I have started buying bits and pieces I will need whilst in hospital and when I get home and it really feels as if things are coming together at last. When we get a bit nearer to my departure, I will post my packing list, in case it’s of use to any fellow MS Warriors in the future.

When I get home after my treatment, my immune system will still be very low and it will be necessary for me to take precautions to avoid infection. I will be asking friends and family to stay away if they are unwell and will be avoiding certain foods such as soft boiled eggs, blue cheese and sushi. I will also be keeping the house scrupulously clean. Niamh and Sophie have volunteered to do a “deep clean” shortly before I come home and we will need to be obsessive about wiping surfaces, light switches, handrails etc to lower the infection risk. We will use anti bacterial hand gel regularly throughout the day and most importantly of all, I’m going to try really hard to keep my hands away from my face (the number one way in which we catch infections).

Arrangements are in hand for my blood levels to be monitored by my GP on my return (with support from Haematology if needed). My GP will also be providing “fit notes”, which Niamh will collect and pass on to my employer while I’m away.

Something I Have had to give a lot of thought to, is how to avoid any risks from my two cats, Ziggy and Luna.

Thankfully neither of them are biters/scratchers and it’s fine for me to touch and interact with them, provided I wash my hands afterwards. We have already ensured that their immunisations are up to date and I will make sure to avoid cat litter duties for the first few weeks. The biggest cat problem I envisage is keeping them off my bed and out of my bedroom 😼

I love having plants and flowers in the house but both soil and flower water are potential sources of bacteria and fungal spores. I am going to send all my houseplants to Connor and Sophie’s house for a while and will be politely requesting visitors don’t bring flowers.

—- 🌷🌷🌷 —-

As you are aware, we have been fundraising to pay for my treatment for some time now. The cost of treatment is 45,000 Euros and with the value of the pound so unsteady at the moment, I find myself anxiously watching the financial markets to see where it is up to. There was a big dip earlier this week, which sent me into a bit of a panic! I’ll be so glad when I’ve made the payment and can stop worrying about this so much!

Our GoFundMe appeal has raised £21,181 so far … thank you to each and every one of you. We have a few fundraisers in the pipeline and will continue after my treatment, until borrowed funds are replayed. If anyone has any fundraising ideas or would like to do a sponsored event, please get in touch with one of us.

At this point, any and all donations will be gratefully received via the GoFundMe page linked below.

GoFundMe

Thank you for all your amazing support over the last 18 months …I can’t believe we’re almost there at last! 😘

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