spoon theory – 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 😘

60 Fatigue

After an amazing Christmas break, I returned home with a long list of jobs to do and people to see before I have to go back to work next week. So far I’ve been able to tick very few items off my list, as a bout of energy-sapping fatigue has gradually crept up on me.

Yesterday, I planned to go to the cinema in the afternoon with Niamh, then to a local pub with a friend, to see another friend, singing with her band. When I woke up, I realised I didn’t have enough spoons to get through both, so I cancelled my evening out and had a lovely afternoon at the cinema followed by a quiet evening at home.

This morning I awoke after 9 hours sleep, feeling exhausted and heavy. My feet and lower legs feel cold and dead. After struggling for a few hours, I cancelled my plans for the day and went back to bed.

I hate the way this disease is robbing me of being able to do what I want and of time with people I care about. I am comfortable with my own company, I really don’t mind being on my own, but I’m also a sociable person and my friends and family are important to me.

One of the things I have done to help me cope with bouts of fatigue is to reduce my hours at work, so when the new term starts I will be working 4 days a week instead of 5. I’m a bit concerned about how this will work out financially, but I’m hopeful I’ll manage and it should give me more time to rest, to see friends and do all the other things I need to do.

…

I wouldn’t usually wish to link to the Daily Mail, but they have written a piece on Caroline Wyatt and her experience with HSCT. The piece also refers to the sad death of Nyta Mann, a BBC political editor who chose a different route when MS took over her life.

How two BBC stars took different paths dealing with MS

Spoon theory

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49 She’s a waterfall …

I’ve been feeling a bit sorry for myself over the last few days. Lots of reasons – worrying about the future, wondering how long I can manage working full time, resenting how much time I spend planning how to preserve spoons (see previous post on “spoon theory”), noticing worsening symptoms and also dealing with feeling cold most of the time.

According to the MS Trust, between 60 and 80% of those with MS struggle with heat sensitivity …I don’t think I fall into this group. This is what they say about cold sensitivity…

“Cold sensitivity is less common with MS than heat sensitivity, and it tends to affect different symptoms. The symptoms most likely to be affected are nerve pain, mobility and spasms. Depression and fatigue may also be triggered by the cold, particularly if it coincides with poor weather and less sunlight.”

I think that sums it up nicely! I always struggle mentally with winter and this year is no exception. In addition to this, my thyroid levels are all wrong at the moment, so feeling cold is something I’m stuck with for now. As well as MS, I have Hashimoto’s Disease (autoimmune thyroid disease) and am currently working with my GP to get my meds at the right level – unfortunately we’re not there yet!

Yesterday, whilst scrolling through Facebook, this photo of me from exactly a year ago popped up …

A year ago I could go to a gig and dance all night, I didn’t need a walking stick or a Blue Badge and although I was experiencing episodes of fatigue, I didn’t have to give too much thought to how many spoons I had left to get through the day. I am haunted by the feeling that I’m slowly fading away.

Today I met with my lovely friend, Beth for a coffee and a chinwag (therapy really!) and when I got in the car to travel there, one of my favourite songs came on the radio …

This song has a lot of meaning for me – it tells me I can get through things if I just keep going. So, I can get through this bit of a blip too. Thank you Stone Roses and XS Manchester.

Later, I had a visit from my son and his dog and we went for a walk in my local park …lovely.

So, today has reminded me that the best things in life are all around us …we just need to make sure we value and appreciate them. Here’s my list from today:

Music 🎼
Friends 👭
Coffee ☕️
Cake 🍰
Family 👩‍👧‍👦
Pets 🐶😺
Fresh air 🥾
Sunshine ☀️
Trees 🌳
Water 💦

❤️

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31 Manchester Half Marathon 2018

Yesterday was an amazing day! We had an early start in order to get over to Trafford Park in time for a quick visit to the portaloos, an even quicker warm up and the start of the 2018 Manchester Half Marathon. It started drizzling just as we got out of the car and didn’t let up until we were back home several hours later!

The wet weather didn’t seem to dampen the spirits of the runners, spectators or organisers and the whole event was really well organised and very enjoyable (from a spectators point of view anyway!).

Nick is a seasoned runner and registered for the event a while ago, meaning he was in starting group B. The others were all in the final group, group G.

With 1400 people running, it took 30 minutes for them all to set off from the start line. I can’t fault the organisers and everything went like clockwork.

With my fellow supporters (Sophie, Ian and Odin), we managed to find a spot at the 5K point and waited with excitement for our team to appear. First past was Nick, who was so fast that none of us managed to catch a photo of him! After a bit of a wait, Connor appeared, looking happy and energetic …

Somehow we missed Gleaves in all the crowds but spotted Niamh and Heather running well together. They were so excited to have seen us cheering them on that they hugged, which made us smile!

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(Click link for video)

At this point we decided to head for the finish line, grab a spot and wait. By this time it was raining heavily and the only way we could see the road was to stand in a puddle! We were about 100 metres before the finish line, so spent the next hour cheering various runners through their last painful steps. I can’t tell you how much I admire each and every one of the people taking part today. Just getting round those 13.1 miles in the cold wet conditions is an amazing achievement. There was a great atmosphere amongst the spectators and lots of support for all the runners.

We all became super excited when Nick suddenly appeared, still looking fresh and running well. After a bit of a wait, Connor appeared and managed to find a surge of energy as we cheered him on to the finish line.

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(Click link for video)

Next through was Gleaves …we were so relieved, having not seen him at all since the start. He managed a smile and a wave and ran for the line.

We then waited anxiously for Niamh and Heather. We knew this was a huge challenge for them both …Niamh running with a hip injury and Heather having only started training a month before. We were overjoyed when we finally spotted them. Both were struggling but looked determined as they ran that final 100 metres and crossed the line hand in hand. Nick, Connor and Gleaves had joined us by this time, so we gave the girls a big cheer then whizzed round to the meeting area to find them.

A couple of Niamh’s friends, Lois and Jess, managed to get a spot on the other side of the road a little nearer the finish line so Niamh and Heather got double cheers for the last bit of their run.

After some emotional reunions and tales of pain, tears and amazing support from each other and from fellow runners, we headed home for hot baths and pizza!

What a fantastic day! Connor, Niamh, Heather, Nick and Gleaves …you were amazing. I couldn’t be more proud and pleased and so touched by your effort.

Everyone is struggling a bit today with sore legs and low energy, but I hope the fantastic five are also feeling very proud of themselves …they really should be.

Some numbers …

Nick – 1 hour 37 minutes (he was aiming for under 1 hour 40]

Connor – 1 hour 44 minutes (he was aiming for under 2 hours)

Gleaves – 2 hours 18 minutes

Niamh and Heather – 2 hours 21 minutes (they were aiming for under 2 hours 30) Continue reading 31 Manchester Half Marathon 2018

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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