Vicky

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

121 To wig or not to wig?

As you already know, I will almost certain to lose my hair during the chemotherapy part of my treatment. When I first started researching HSCT, I was pretty horrified at the thought of being bald. I like my hair and as a woman, feel it is part of my identity. As I have travelled further along this road, I have changed my view on this and am now viewing the phase of hair loss as a positive symbol of my body responding to the chemotherapy and regrowth as a symbol of recovery.

A couple of people have asked me why I won’t be wearing a cold cap during treatment. The cap can be worn during chemo to reduce blood flow to the head, so that there is a reduction in the concentration of harsh chemicals getting to the hair follicles. Many people having chemotherapy for cancer have successfully preserved their hair in this way.

During HSCT, the purpose of the chemo is to partially ablate the immune system. As immune cells exist throughout the body, it is important that the chemo drugs are able to circulate everywhere, in order to maximise their impact. In short, wearing the cold cap could cause a few immune cells to hide in the scalp area and thereby avoid the chemo.

So, I have accepted that I will lose my hair! And I feel ok about that.

Over the last 6 months I have adopted a shorter hair style to prepare myself a little for what’s ahead. I have surprised myself by actually quite liking having shorter hair. When in Russia, there is a point in the treatment schedule when patients shave off their hair. This is because shedding hair can present a potential infection risk to those with a compromised immune system, so it’s better to shave it off before this happens.

I must admit to being slightly intrigued about what I will look like with no hair! I have followed many others online through treatment and notice that many people actually look really good bald! I’m not expecting to fall into that category, but I’m not planning to be too obsessed about it either.

I have bought a few scarves and chemo sleep caps to wear during the early stages of my baldness and have also started to look at head wrap instructions online.

For anyone who is anticipating hair loss, this website has a lot of good advice … Headcovers Unlimited.

What I haven’t worked out yet, is whether I will be happy to rock a headscarf until my hair has grown back sufficiently, or whether I will want to wear a wig.

It seems there are lots of places one can buy wigs these days and I’m not sure where to start. There is a huge variation in cost, from under £50 to several hundred pounds. Some are made using man made fibres and some from human hair. I understand that it is possible to buy a refurbished wig and that there are organisations that provide refurbished wigs for those who have hair loss due to medical conditions and treatment …but I’m struggling to find out how to access this service.

So, if anyone out there has any wig buying knowledge or experience they are able to share with me, please get in touch.

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Jimmy and Gill are planning to shave their heads to raise funds for my treatment … both seem totally unfazed at the thought of being bald, which I find quite inspiring. The head (and chin) shaving will take place at Swan Brewery in April, when they will also be launching a new beer to celebrate their baldness.

I am back at work tomorrow after a week off for half term. I am quite worried about how I’m going to manage, as my head is all over the place, I’m not sleeping and I’m terrified of coming into contact with germs!

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It’s just 3 weeks (tomorrow) until I travel to Russia …I can’t wait! Plans for our final fundraiser are well in hand and I am looking forward to seeing friends and family before I go …I’m sure it’ll be an emotional day.

Swan Brewery

GoFundMe

120 29 Days!

It’s less than a month until I make the journey to Russia for HSCT …I can’t wait!

My flights are booked and I have started packing and preparing. I’m feeling really positive and happy with my decision to do this. This disease is devastating …it gradually robs you of so much of your life and totally takes control. Now I am taking back control, fighting back, making decisions for myself rather than just letting this disease take over. Mentally, I feel better than I have for a long time.

My MS symptoms continue to cause me problems. I no longer feel safe in my own home as the stairs are so challenging for me. My house was built in the late 19 hundreds and no one thought about disabled people then! I struggle every day with fatigue, pain, brain fog and a host of other low level but concerning symptoms.

But I’m optimistic. I’m taking matters into my own hands and it feels right.

I have started buying things for my trip to Russia and preparing for my return home. I still have a lot to do and my preparations also include trying to take good care of myself, prioritising my well-being and avoiding anyone who is unwell!

My family and friends continue to be a fantastic support …I really couldn’t do this without you all …thank you ?

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We are planning a tea party as a final fundraiser and an opportunity for me to see as many friends as possible before I go.

We have had an amazing response to this event – thank you to everyone who has replied, paid or offered support. I am delighted that my brother and his family are coming up from Herefordshire and my sister is coming over from Germany… it’s amazing how far people will travel for cake!

We have a limit of 80 people for this event so if you’re planning on coming, please make your payment as soon as possible (£10 for adults £5 for children). We are happy to take payments via PayPal, so do get in touch if this would work for you.

If anyone close by has a tiered cake stand we could borrow, please let us know. We’ve already been offered quite a few and I found a lovely one in a charity shop the other day. We need at least 20, so still looking for more.

It’s half term here this week …I am so relieved! This has been the longest half term ever and every day has been a struggle.

I will be doing some more Russia preparation, catching up on sleep and have just returned from a few days away with this lovely lot …

GoFundMe

119 Wobbly legs

A few weeks ago, a small child asked me why I need to use a walking stick … “because I have wobbly legs” came my reply. She was happy with my explanation and that was the end of the conversation.

More recently, a friend asked me how my legs felt …not a rude or intrusive question, but a genuine attempt to understand how my MS feels and affects me. I realised that I very rarely talk in detail about this, partly because it varies such a lot from day to day (or even hour to hour) and also because it’s so very hard do describe.

MS isn’t like anything else I have experienced and it can affect any part of the body, any movement or function and any sense or perception. The brain and spinal cord do an amazing job of transmitting messages around our bodies, but when these messages become distorted or are blocked or diverted, the brain tries really hard to interpret them in some meaningful way. This leads to some rather bizarre sensations.

In our everyday lives, there so much about our amazing bodies that we take for granted …walking, talking, moving around, completing any simple or complex task etc etc. Most of this we just do, without much thought and without forward planning. Even standing, walking and remaining upright are a result of complex messages between the inner ear and the brain, the eyes and the brain and between all the muscles in the body and the brain. The brain is constantly monitoring these messages and making adjustments to how you stand and move, to ensure you remain upright and can make movements with control, accuracy and safety. This is all happening at lighting speed, all the time, without you even knowing about it …amazing!

Unfortunately I now find that I do need to think about it, all the time. Every time I stand up or sit down, when walking, standing and staying upright. It’s exhausting. A momentary lapse in concentration can lead to a fall and falling hurts …a lot!

My stick gives me a little bit of support, so that I don’t have to concentrate quite so hard. At home I cruise round the furniture and door frames like a toddler. Everything I do takes twice the energy, twice the time and a bit of planning. This all becomes even more challenging when I’m tired, stressed, cold or if I’m somewhere unfamiliar. If I’m outside and it’s wet, windy or icy, if the ground is sloping or uneven, it all becomes even more difficult. That doesn’t mean I can’t do it …it just means it’s harder and uses up more of my precious reserves. I seem to spend a lot of time deciding on what or whom I should give my energies … everything comes at a price.

As well as balance problems, I also have problems with pain and spasticity in my legs. Most of the time, my feet and lower legs feel like dead, cold heavy weights. Do you remember that feeling when you were a kid and you’d play out in the snow in your wellies for just a little bit too long? Your feet would get colder and colder, then start to sting and hurt then start to feel a kind of numb and uncomfortable pain. This is how my feet feel all the time. I’m told that the usual sensory signals from my feet are jumbled and confused, so my brain is trying to interpret them as something it knows.

I have other strange sensations in my legs too. It seems we must have an awareness of clothing touching our bodies all the time, except sometimes I don’t! Sometimes, it feels to me as if I must be wearing shorts due to the absence of this feeling, or as if my top has ridden up at the back. Sometimes I feel that I have patches of intense hot or cold on various parts of my body (usually my legs), yet the skin doesn’t feel hot or cold to touch. Sometimes I have a sensation that something tight is tied around my legs … I have itching, tickling, crawling sensations … my poor brain is obviously very confused by the signals it is receiving. This collection of symptoms is called Paresthesia.

I also experience MS muscle stiffness in my legs and hips. Sometimes this painful and uncomfortable and at other times is just a minor feeling of stiffness.

So, with this combination of balance issues, paresthesia and spasticity, I very often have wobbly legs and perhaps my first explanation was a good summary after all!

GoFundMe

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.

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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! ?

117 MS and HSCT online roundup

I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!

I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.

Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.

At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).

I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah ?

I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …

There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.

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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.

He has written a couple of blog posts for MS-UK to summarise his experience …

Part 1 My neurologist tried to talk me out of having HSCT

Part 2 I was told to expect the worst I could imagine, and then some

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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.

I thought I’d share the link in case any fellow MSers are interested … link

Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.

You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.

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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️

I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.

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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.

My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family ?

GoFundMe

116 Latest news …

It has been a hive of activity here in down town Edgeley this evening and I have some exciting bits of information to share with you …

My flights to Moscow are now booked! After two days of online searching and careful consideration of various options, I am booked to travel out on Monday 16th March and back on Wednesday 15th April. I will be travelling via Frankfurt in both directions and for the first time in my entire life, by business class on the journey home. I’m so relieved to finally have my travel plans in place …it’s really happening folks!

We are planning to hold a fundraising afternoon tea party before I go and hope that many of you will be able to come. We think we have a venue for up to 80 people, thanks to my amazing friend (and boot twin) Anne.

The date for this is Sunday 8th March …please put it in your diary, tell your family and friends and look out for final information coming soon.

We are planning a lucky dip bottle bag fundraiser and Niamh (with the help of Luna) has made a good start on the preparations.

Many thanks to all of you who have donated bottle bags and items to put in them. If anyone has any unwanted bottles of anything left over from Christmas, we’d be happy to take them off your hands!

If anyone has any other ideas for last minute fundraising, please get in touch with one of us.

GoFundMe

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated. I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa. I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done.

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists. My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home. I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April. I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home.

The first few days are taken up with pre treatment testing. This is to ensure there are no hidden medical conditions which could be impacted by HSCT. There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines. During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing.

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood. These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow. It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment. I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.

Isolation

The period in isolation is not as alarming as it first sounds. The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again. I see the isolation phase as a time to rest and recover and allow the body to heal and repair. I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!). I’m not worried about coping with isolation.

Hair Loss

Yes, I will most likely lose my hair!

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended. I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now. Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like! I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks.

Once I am home, my GP has agreed to manage my aftercare. This will mainly involve monitoring my bloods to ensure my immune system is regrowing. When first home, I am likely to be tired and in need of peaceful rest. It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people. My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster. The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …

GoFundMe

114 Feeling positive

Well, after my slightly miserable New Year post, I am pleased to report I’m over that little hurdle now and feeling much more positive. I went back to work on Monday and had a good week. I was tired by the end of it, but not as overwhelmed with fatigue as I was back in November and December. It actually felt good to be back with my fabulous work mates and to get back into a routine. Thank you everyone who helped to make it a good week.

I am booked to go to Russia on Monday 16th March, which is just 9 weeks away! I have completed my hospital registration forms and am awaiting my official invitation, which is needed in order to obtain a Russian visa. I also hope to book my flights in the next few days. At long last, it’s really happening!

There is a lot to do over the next 9 weeks …

We will be having a last push on the fundraising and have a few plans coming together (more info below).
I need a dental check up (it is best not to have dental work for 12 months after HSCT).
I need to plan on what to take with me and pack everything for a month into one suitcase.
I need to think about how to prepare the house for my return with a low immune system.
I need to mentally prepare myself for the treatment and for a month away from home, from family and friends and from my beloved cats!

I’m the kind of person who likes to make lists, so hopefully this will help me to get organised.

It’s the first Vintage Village fair of the decade tomorrow and Sheila has decided to give it a go! If you’re in the area, please pop in and say hello and grab yourself a vintage bargain.

We are in the beginning stages of organising an afternoon tea party shortly before I go (hopefully Sunday 8th March). This will be a fundraiser and also a chance for me to see everyone before I go. We will let you know more once our plans are finalised.

There is going to be a fundraising event at Swan Brewery in Herefordshire on Friday 3rd April. My brother and my sister in law are planning to shave their heads and beard (only one of them has a beard!) and to launch a new beer to mark the occasion! I am so grateful to them for doing this and since I’ll have lost my hair by then too, we can all be bald together!

The lovely ladies at Seed Beauty in Edgeley are doing a sponsored walk up Mount Snowden in North Wales. This will be happening towards the end of March and I look forward to following their story from Moscow.

As you can probably tell from the numerous requests for bottle gift bags, we also have a bottle lucky dip coming soon.

1 year ago we had just crossed the £10K line and here we are now a little over £20K. This is such an amazing achievement and just shows what people can do when they work together. It so good to see kindness and generosity shining through, even though we are living in such uncertain times. I am so grateful to every one of you who has donated, responded to requests for items, come along to an event, taken on a challenge, shared or liked one of our posts, read this blog or sent a message of support …thank you all ?

You can find out more about Stockport Vintage Village by clicking here

You can find out more about Swan brewery by clicking here

You can find out more about Seed Beauty by clicking here

GoFundMe

113 Reflections

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

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

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

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

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

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

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

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

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

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

Happy new year everyone!

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