MRI scan – Another MS Warrior

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 😘

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!)

112 Happy Twixmas!

Hello everyone and happy twixmas! What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is! What shall I eat and when? Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?

The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.

A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later. The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward. Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help. So off we went across a rather foggy Snake Pass, ready for my appointment.

I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!

Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment. Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London! Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.

Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!

Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision.

It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards. I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.

We were rather deflated on our journey home. We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long. Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow. I’m booked to go on 16th March, which is just 11 weeks away!!!

So, let’s get on with fundraising!

At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards. We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded 🙏🏻😘

Our grand total now stands at …

We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help. Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme. If so, please let one of us know.

If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.

Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)

I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support 😘

GoFundMe

100 Another whinging blog post …

If you’re someone who thinks this blog is nothing but self indulgent ramblings, you may want to skip this post!

I have no good news to tell you, as my pursuit of HSCT in the UK has hit a serious set back this week. I phoned the appointments team in Sheffield (yet again) and was told that I have finally been allocated an appointment … on 5th February!!

I mentioned that Professor Sharrack had wanted to see me before 20th September and he confirmed that was the case, but that 5th February is the next available appointment.

Having already waited so long, this was really tough news to take. I appreciate fully that our health services are under immense pressure and that demand for this treatment is increasing, as more and more people are hearing about it. The situation is nobody’s fault (well, apart from the politicians who have underfunded the health service for years), but it’s still very upsetting.

I have spent the last couple of days talking with family and friends, trying to work out how best to proceed. Every day I am getting a little bit worse …I can’t keep delaying and delaying.

I have emailed Professor Sharrack to raise my concern, explain how this is affecting me and to ask if he can do anything to help. I suspect he has little to do with appointment allocation, so probably doesn’t know what the situation is. So far he has not replied.

I have also initiated a GDPR request to obtain a copy of my July scan report.

From next week I will be phoning the appointments team on a regular basis to see if there have been any cancellations (I don’t hold out much hope for this …if you’ve fought like mad to get an appointment at the HSCT Clinic, you are unlikely to cancel it).

If we can’t get some clear answers in the next few weeks then I will be back in touch with the clinic in Moscow and relaunching my fundraising campaign. I must admit that at first I couldn’t really face doing this – it really is such hard work! But I have been reassured by family and friends that they will help as much as they can and some have come up with a few fabulous fundraising ideas already!

It has been a tough week for all of us but I’m feeling a little calmer now. The road to HSCT has been long and arduous, with many unexpected bumps along the way …but I WILL get there in the end.

Thank you to everyone who has supported me over the last few days …you really are amazing 😘

99 The story so far …

Today, 16th September 2019, is exactly one year since we launched our fundraising campaign, asking family, friends and strangers to help raise a massive £40K to fund HSCT for me in Moscow. I know I have many new readers since then, so thought now was a good time to write a bit of a summary of the story so far and also to reflect on how far we have come.

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2017, after at least 5 years of worrying symptoms and concerning finds on MRI scans. I also have Hashimoto’s Disease, autoimmune thyroid disease, which was diagnosed in 2006.

The progression and accumulation of disability of my MS has been rapid. At the time of diagnosis, my EDSS score was around 1.5 and by December 2018, my neurologist assessed me as 6 (I think I am nearer 5 or 5.5). I have other long term problems and don’t want to get any worse.

In May 2018, I saw a BBC news report about HSCT (Haematopoietic Stem Cell Transplant) being successfully used to treat MS and halt its progression (HSCT does not cure MS or undo previous damage to the brain and spinal cord). Since then, I have been reading, researching and talking to others in order to learn everything I can about HSCT and find out whether could be a viable option for me.

Click here …

Stem cell transplant “game changer” for MS patients – BBC News 18.03.18

By the Summer of 2018, I had come to the conclusion that it could and began looking seriously at how to access the treatment. I was aware that some MS patients have been successfully treated in the UK, but that the criteria for inclusion were very specific. I also knew that I did not meet the criteria, so began researching options abroad.

To cut a long story short, I identified a clinic in Moscow, the AA Maximov Department of Hematology and Cellular Therapy, as my best option. Well over 1000 international MS patients have been treated here, with several hundred from the UK.

The cost is €45,000 and with the exchange rate at that time and the additional cost of flights and visas, we worked out that we would need £40K to get me to Moscow for the treatment I need.

We launched our Go Fund Me page on 16th September 2018 and began organising events and taking part in challenges to raise money. Thanks to the generosity of friends, family and kind strangers, we have raised ….

In the mean time, I also applied to the clinic in Moscow, sent them my full medical records and was accepted for treatment. We had hoped that I could have HSCT in April 2018, with a plan to borrow the rest of the money needed and to continue to fund raise afterwards. Then, a couple of months before this, I heard about a new HSCT trial planned to take place in the UK, being led by Professor Sharrack (neurologist) Professor Snowden (haematologist) and at Sheffield Hallamshire Hospital. This is the team mentioned in the BBC link above. I contacted both directly and despite not meeting their published criteria, they agreed to see me.

I had my first appointment with them in June, followed by an MRI scan in July. I was told I’d have a follow up appointment in August, but I’m still waiting. They tell me I will be allocated an appointment on Monday (16th September) and will receive a letter soon after.

The last few weeks have been very difficult for me. I’m not good at being patient or at not knowing what’s coming next. I also feel that all other aspects of my life are in limbo …I can’t plan anything! I must admit this has really got me down.

Hopefully by the end of this week, I’ll have an appointment date and feel a bit calmer about it all! I think once I have a date, I will be able to throw myself into other things until the date approaches.

The decision on whether to treat me in Sheffield or not, all hinges on the outcome of my recent MRI scan …if there is current disease activity, then the answer could be YES. If there is no current disease activity, then the answer will definitely be NO. My last 3 scans (most recent in May 2018) all revealed current disease activity, which was upsetting and worrying at the time. Now I’m in the strange position to be hoping for disease activity!

I am still in touch with the clinic in Moscow and they are aware of my situation. If I receive a NO from Sheffield, I will ask for the next available date in Moscow (likely to be early 2020).

Here’s a summary in numbers, of all we have achieved …

Funds raised … £18,646
Number of donors … 147
Go Fund Me followers …145
Blog posts … 99
Blog subscribers … 22
Blog views … 5,283
Facebook followers … 107
Instagram followers … 208
Twitter followers … 262

Never in my wildest dreams did I think we could achieve this much, so thank you to everyone who has donated, helped with events, provided support, shared online and who have been there for me through this journey so far.

Hopefully I’ll have an appointment update by this time next week!

GoFundMe

Facebook

Instagram @anothermswarrior

Twitter @AnotherMSWarrio

94 The big loud tunnel monster

This week I had an unexpected meeting with an MRI machine, or “the big loud tunnel monster”, as one of my fellow MSers likes to call it! My appointment was originally on 25th July, but on Friday, I received a call from the hospital asking me to come in the following Tuesday. The timing couldn’t have been better …I had a weekend with family planned (my sister in law’s 50th), which would keep me occupied, with little time for anxiety to build.

I had a lovely weekend with my family – kotlich, a Blue Grass live band, Swan Brewery beer and some metal detecting thrown in!

My scan appointment was in the afternoon so easy train travel (using my new Disabled Person’s Railcard) was possible. I had a couple of hours at work in the morning and by chance spent some of it with a psychologist who works with my team. I work with children who are in care, many of whom have experienced trauma, loss or abuse, so Sally’s input is invaluable to our work. I mentioned to Sally that I was having an MRI scan that afternoon and my slight claustrophobia was concerning me – she gave me some advice about deep breathing, meditating and focussing my attention on my bottom, legs and feet.

I arrived at the hospital in plenty of time to confirm I don’t have a pacemaker or metal fragments in my eyes (for the umpteenth time) and was soon being inserted into the machine.

I must say that this was my best scan yet, in terms of managing my claustrophobia. The staff were kind and helpful and the whole set up helped to keep me calm. When having a brain scan, there is a plastic head frame used to ensure you keep totally still. This one had a mirror system, a little like a periscope, so that I could see my feet and the window to the control room, where I could see the radiologist monitoring a computer screen. This really helped me to stay in touch with the world outside the machine and reduced my claustrophobia.

I was in there for just over an hour (being tall, I have a “long spine”) and managed to follow Sally’s advice to focus on my lower body. This was really helpful – so much so, that I later told the radiologist and she said she would be giving this advice to others in future.

Once recovered, I enjoyed half an hour in the sunshine outside Sheffield Train Station, before catching the train home.

The next day I phoned the transplant team as requested and informed them my scan had taken place. Apparently Professor Sharrack can now look at the images through their computer system straight away, although the radiologists report will take another 4 weeks. I really am impressed with the system in Sheffield as here, there is a 2-3 month wait for scan results and the neurologist never actually gets to view the images.

So now I wait for a further appointment sometime mid August for further discussion. Keep your fingers crossed that something shows up on that scan that convinces Professor Sharrack I am suitable for HSCT.

Here are my MRI scan top tips …

Arrive in plenty of time to have a chat with the radiologist, answer the metal-in-your-body questions, remove any piercings (ladies, you will have to remove your bra) and generally get yourself ready.
Tell the radiologist if you are claustrophobic (I have found sometimes they hardly respond and other times they do what they can to reassure you before and during the scan).
If you are to have a contrast agent injected and you are anxious about needles, it might be helpful to tell someone when you arrive. I once had them pull me half out of the machine to inject me, which I found stressful, despite being fine with needles. On this occasion, they put a cannula in my arm before I went in, so it was easy for them to administer the contrast agent without further needles.
Wear clothing that has no metal fastenings or zips. They will provide a hospital gown if you are wearing unsuitable clothes, but it is fairly cold in the machine and gowns don’t cover much! You can always ask for a blanket if you are cold.
You will have to take your shoes off (most have metal in the fastenings) -bring a pair of socks rather than having bare feet, so that your feet are warm and comfortable.
Make sure they put a pillow or support under your knees as this takes the strain off your lower back and hips (you are going to be lying still for a long time).
Don’t be alarmed by the sound of the machine! Despite having ear plugs in and headphones on, it is very LOUD! There is no regular pattern to the sound – banging, whiring, grinding, clanking, low and high pitched metalic sounds.
It’s hard to block out the sounds and truly relax, but deep breathing and meditating can help and definitely focus on your legs and feet (so glad I learnt this …thank you Sally).
Take your time afterwards. I often feel dizzy after a scan – probably due to anxiety, relief and the effect of lying still for a long time.

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The big loud tunnel monster was named by @MSWarriorPrinc1 on twitter.

More information on Swan Brewery can be found here …Swan Brewery

Thank you to friends and family for all your ongoing support on this weird and whacky journey xx

92 MRI Scan

My MRI scan in Sheffield is booked in for 25th July, so thankfully not too long to wait. I am relieved that it’s a full head and spine scan, with contrast, so Professor Sharrack will have a thorough picture of what is happening. The contrast agent allows current inflammation to be differentiated from previous areas of damage. The only down side is that the appointment is at 7.20 in the morning and I live over an hour away from the hospital!

I’m quite impressed by the system in Sheffield – there are 5 hospitals all under the umbrella of Sheffield Teaching Hospital NHS Trust and all services are provided by the NHS. In Stockport, MRI scans are provided by a private company based in premises within the hospital grounds. There is a distinct lack of communication between the consultants and the team responsible for the scans, in fact I recently discovered that my neurologist has never viewed my scans himself and has made decisions based solely on the radiologist’s reports. Thankfully Professor Sharrack has already informed me that he will be looking at the scans, as well as the reports and is also planning to review all my previous scans (once the private company involved lets him have copies!).

I’m slightly anxious about MRI scan as I can sometimes feel quite claustrophobic. I have learnt to keep my eyes firmly shut during the whole process and to do breathing exercises in order to keep calm. The newest machines have internal lighting and a gentle flow of cool air, which I find very helpful. On a couple of occasions I have been asked to “keep still” whilst in the machine, when my only movements have been me shaking with fear! Having said all that, I have become braver at each scan and can now manage these appointments without someone with me. This scan will take over an hour, with two needles in my arm to deliver the contrast agent …I may need more than deep breathing to get me through!

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So, the next few months are looking a bit like this …

25th July – MRI scan

End of August/ beginning of September – Appointment with Prof Sharrack and Prof Snowden – the outcome of this appointment will decide whether I can have HSCT in the UK.

I have already decided that if the answer is no, I am going to get to Russia for treatment as soon as I can after that (November / December?). This will mean borrowing to add to the funds raised and continuing to fundraise next year. I’ll tell you more about that if we have to go down that Road.

Keep your fingers crossed for me!

91 Sheffield update

I want to begin this blog post with a big thank you to everyone who has been in touch, wished me luck, and offered supportive words and hugs this week. It means such a lot to me and I am very grateful for the wonderful friends and family I have in my life.

My visit to the HSCT Clinic in Sheffield was interesting, mostly positive and very exhausting! I had a full neurological examination (involving being prodded with pins, hit with hammers and having tuning forks held on my joints!), a long discussion with a neurology registrar, meetings with Professor Sharrack (Neurology) and Professor Snowden (Haematology), a discussion with two haematology nurses and had bloods taken.

I am now waiting for an MRI scan (mid July) and a further appointment with the professors (mid August) for a final decision. I have found myself in the rather peculiar situation of hoping that this MRI scan will reveal new disease activity – my last three have, but the most recent was 13 months ago and the Professor is interested in the last 12 months.

The haematology nurses provided me with a lot information about the treatment and how this is managed in Sheffield. They have treated 60 MS patients there over the last few years, with the number treated each year gradually increasing. I was very impressed with the level of care and excellent treatment planning I heard about.

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I have a couple of fundraising updates to tell you about …

My beautiful niece and her friends ran a stall at their school and raised a fantastic £25!! Thank you Anna and friends xxx

A while ago, I took a box of unwanted bits and pieces to Maxwell’s Auction Room, hoping to raise a couple of hundred pounds. Today I received a cheque for £450! Such a lovely surprise! There are a few items still to sell (in a “collectors auction” in July) so hopefully more to follow. If you have any old rubbish in your loft, I’d really recommend taking it to the auction room.

Maxwell’s Auction Room

Maxwell’s is used on TV in Dickinson’s Real Deal and Cash in the Attic

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Obviously, with the timescale of things in Sheffield, I’m going to have to revise my plans around treatment in Russia and continuing to raise funds. I hope to let you know about that very soon. I have been discussing all decisions with my family throughout this journey and they have been a huge help and a source of really useful ideas and advice.

Thank you again for your ongoing support ❤️

30 MS Fatigue

I have been thinking about writing a post about MS Fatigue for quite a while now, but have been holding back as it’s so hard to describe and explain and I don’t want to come across as being negative.

I work really hard on maintaining a positive attitude, as I really do think it’s the best way to cope with chronic illness and life’s challenges in general. That’s not to say I am happy and jolly all the time – I have my dark days and nights as much as anyone else, but I do make a conscious effort to stay positive as much as I can.

Fatigue is one of the most common MS symptoms and one of the hardest to deal with, because of the impact it has on everyday life, the fact that it is invisible to others and that it’s impossible to measure. Fatigue is the most common reason for MSers to stop working or to reduce their working hours.

The exact cause of MS Fatigue is not fully understood, in fact there is so much about this disease that remains a mystery. “Primary fatigue” is fatigue caused by the condition itself: the MS Society describes it like this …

“MRI scans of people who have fatigue show that they use larger areas of the brain to carry out activities than people without fatigue. Perhaps the brain is finding new routes for messages when the usual nerve paths have been affected. Finding new routes might mean it takes more energy to carry out an action, and this might cause fatigue.”

MS Society – Fatigue

“Secondary fatigue” is accumulated fatigue caused by the difficulties of living with the disease and its symptoms. Everyday activity requires a lot of concentration so as not to fall or bump into things or knock things over – I certainly notice that I have to work harder at this the more tired I am feeling.

The MS Trust has excellent information on fatigue here …

MS Trust -Fatigue

Spoon Theory

Spoon theory was devised from a metaphor Lupus sufferer, Christine Miserandino used to explain her daily struggle with fatigue and varying energy levels. She used spoons to represent the energy and effort needed to complete every day activities, explaining that healthy people will have unlimited spoons most of the time, whilst those with chronic fatigue have only 12, which they must use with care. If you use too many spoons on one thing, you will not have enough spoons left for others.

Christine’s idea has resonated with many suffering from long term illness where fatigue is common. Her account of how she first used the idea of limited spoons to explain how her illness affected her can be found here …

But You Don’t Look Sick

This is well worth a read …I remember reading this several years ago and it helped me to understand what a friend with Fibromyalgia was dealing with.

Like many with MS, I often have to cancel plans , despite desperately wanting to continue, because I don’t have the energy (or spoons) or because I am worried I won’t have energy left for something else that I must do.

I am a sociable person, but socialising uses up spoons and I always have to make sure I have enough spoons to work and look after myself.

I often have a nap after work as I have reached the point where I literally cannot do anything else …I am all out of spoons!

I have been referred to a Fatigue Management Group at my local hospital, where I will apparently learn how to manage my fatigue (or conserve spoons).

Well, after writing this extra long post and using up several spoons, I’m off for a lie down! 😴

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