Fatigue – Another MS Warrior

134 Falling

Paloma Faith -Falling Down

Falling, tripping, bumping into things, misjudging space and distance – these are all everyday occurrences for many of us with MS. Moving around, using stairs and walking through doorways require concentration and focus and it’s not always easy to maintain that level of focus, when most of your previous life, you didn’t need to! This is one of the reasons why those with MS are often fatigued – every day movement is exhausting.

The Fall – Hit the North

It can also make life a little risky. My arms and legs (and currently my forehead) are often full of mystery bruises from various incidents involving furniture and doorways. I’ve had a few bigger falls and many near misses – loss of balance or footing, or maybe legs refusing to work, but just managing to grab something (or someone) to stop myself falling. I find it quite terrifying!

Fallout Boy – Dance, Dance

A couple of weeks ago I had my worst fall yet and ended up having X rays and various examinations before being diagnosed with bruised ribs (and bruised everything else!). This fall happened in my own home, where I should feel safe and has really shaken me up. If I was having any doubts about moving to a stair free home at this point, those doubts are well and truly gone.

The Primitives – Crash

My house went up for sale a week later and sold for above asking price within a few days. I am very thankful that this was as stress free as it possibly could have been and my buyer seems lovely – she has already promised to love this house as much as I do ❤️

About 10 days after my latest fall, I suddenly developed severe vertigo. My GP and MS Nurse do not believe this is linked to my fall, but is more likely a small relapse. I have a had fleeting episodes of vertigo before but nothing like this – everything moving, nausea and vomiting and everything but sitting still and quiet made it feel worse. I am now awaiting another MRI and an appointment with the Community Rehab Team and have anti sickness meds to help me in the mean time. Thankfully, the vertigo is improving each day and I’m hoping it’ll soon subside altogether.

You can read more about vertigo in MS here … MS Trust – Vertigo

Thank you to friends and family for all your continued love and support on this crazy journey ?

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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82 Brain fog and fatigue

Thank you to all the lovely people who have been in touch recently to check I’m ok. I must admit that the last few months have been hard and I’m mostly feeling quite relieved about delaying my trip to Russia for treatment. I think I am suffering from fundraising fatigue at the moment! …my team of helpers too. So I’m having a little bit of a break from it for now (although still selling things online) and hope to be back on track in a few week’s time.

As mentioned before, I am struggling a little with fatigue at the moment. This is a largely invisible symptom of MS, but experienced by many and is, in fact, the most common reason that pwMS find they have to give up work. I reduced my working hours to four days per week in January and apart from adjusting to the reduced income, I have found this to be a huge help.

Another symptom I am becoming more aware of is “brain fog”. Many MSers experience this and it’s something we all dread. Sometimes I struggle to find the word I am looking for and I’m aware of sometimes feeling, well, a bit foggy! I am very much aware that my ability to concentrate is not what it was. I have always been an avid reader but haven’t managed to read a book for a long time. This is partly because I’m busy and tired, but also because of poor concentration. I can’t tell you how much this saddens me – reading is everything – escapism, broadening the mind, gaining knowledge and understanding, sharing information, to name but a few. I so hope that my concentration returns once I’ve had HSCT, in fact, of all my symptoms, it’s the one that worries me the most.

A few years ago I gained a place on a Masters degree course at Manchester University. I very much believe in life long learning and think we are never to old to learn and achieve. I had to withdraw from the Masters course, as my MS took hold and know it would be beyond me now. Recently an opportunity to complete a post graduate qualification linked to the education of looked after children (children in care) arose at work – the old me would have jumped at this.

I’ve been trying to understand a little more about MS fatigue and brain fog and it seems that the cause of both is the efforts the brain is making to bypass areas of inflammation. We are blessed with brains that can adapt to small changes and work out new neural pathways in order to keep functioning. This uses a lot of energy and “brain power”, so the downside is brain fog and fatigue.

In my efforts to learn all I can about MS, I follow a number of fellow MSers and eminent neurologists online. In fact, I have learnt more by doing this than I have from my own neurologist and MS Nurse! One of those I follow is Dr Aaron Boster, Neuro-immunologist from Ohio, USA. Dr B (as many of his followers call him) believes that when someone has MS, their whole village has MS. The village is the family and friends of the person with the MS diagnosis. He believes that it is important for pwMS and other village members to learn about MS, as this can empower the MSer to “be the most awesome version of themselves they can possibly be”.

In one of his many MS education videos, Dr B describes a piece of research that involved asking people to perform a simple finger movement whilst their brains were scanned for activity.

For people without MS, one specific area of the brain lit up when the person moved their finger. When people with MS were scanned, it was found that several areas of their brains lit up when performing the same movement. This is thought to be due to the brain responding to areas of inflammation and damage, by “re-wiring” and using new areas of the brain in order to retain this functionality. If you imagine this happening multiple times, for all the complex movements and functions of the body, it is easy to see how hard the brain is working and to understand why fatigue and brain fog become an issue.

Two years ago, I didn’t have any visible disease activity in my brain, (on MRI) but my last three scans have shown new “white spots” (areas of disease activity) in my brain which have increased in size and number at each scan.

So, this why I need HSCT now! The disease activity in my brain is fairly new, so there is a greater chance of it being improved by HSCT. My hope is to stop the disease in its tracks and prevent further inflammation in my brain, let my neural pathways settle, stop feeling tired and foggy and start reading again! Maybe even manage some further study one day.

Here’s hoping!

YouTube – Dr Aaron Boster

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76 Slow recovery

Apologies for the radio silence …it’s been a tough old week for me! I really did overdo it last weekend …on my feet for far too long, too much lifting and carrying and staying up late (for me anyway!). I have felt overwhelmed with fatigue and ataxia** ever since and have been concentrating on work and resting.

** Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and speech problems. In some cases, the lack of coordination is seen as tremor.

Read more about Ataxia here …MS Trust – Ataxia

Other than that, it has been a really good week. I’m still feeling thrilled at the amount of money raised at our evening event and still receiving donations from people who couldn’t make it …thank you again everyone.

I was planning on taking a step back from fundraising over the next few weeks as I have a lot to do to get ready for my trip to Russia, but I’ve been contacted by a few people with amazing offers of help …

??‍♀️ My fabulous friend, Beth, has recently learnt the art of Tarot reading, so we are planning a small evening of readings, drinks and nibbles sometime soon. Thank you Beth xx

☕️ A local coffee shop / bar has offered to host an event …more info to follow once we have it.

? A Chinese restaurant has been in touch to offer a fundraising evening. We are at the very beginning of planning this one, but hopefully another fun evening coming soon!

In addition, we have a few fundraisers already in the pipeline …

Glenda is taking part in a sponsored 10K Nordic Walk in April.

Niamh and a team of workmates from Stephenson’s are taking part in the Manchester Gung Ho inflatable 5K at Heaton Park on 6th April.

Alex, Connor, Gleaves and Carl are still working on their mammoth 100K (58 miles) Peak District Mountain Bike challenge.

Cal’s head and chin shave is coming soon!

I am planning to pay for my treatment before we fall off the Brexit cliff on 29th March, so will be borrowing the outstanding amount (and will continue to fundraisers when I’m well enough).

In other news, I have started the process of arranging Visas for myself and Karen this week …it’s really happening folks! ??

I didn’t want to finish this post without acknowledging a big event in the MS world that took place this week. As you maybe aware, Hollywood star, Selma Blair was diagnosed with Multiple Sclerosis last Summer. This week, she rocked on the red carpet for the Vanity Fair Oscars afterparty, with a custom made cane, looking beautiful, fierce, vulnerable and so much more.

She has also given a TV interview, despite being in the middle of an MS relapse affecting her speech.

Selma speaks openly and honestly about her MS on her Instagram page and has also had an interview published in Vanity Fair.

Thank you Selma for not hiding away and for your honesty in sharing the ups and downs of living with MS. There is much happiness to share too and I’m glad that people are getting to see that.

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66 Current symptoms

I have been advised to record an audit of my current symptoms, so here it is! I’m going to use the symptom list from the NHS website as headings:

Fatigue

I experience fatigue often. I still manage to work 4 days per week but find this exhausting. I am no longer able to do everything I want to do and I need to ration my energy and allocate recovery time. I avoid doing anything after work and have had to cancel several social commitments.

Vision Problems

Thankfully I don’t have any MS related vision problems.

Numbness and Tingling

This is an everyday problem for me, in fact I haven’t had a day without numbness and tingling for over 2 years. I get this in both feet and legs and sometimes in my left hand and it is noticeably worse when I’m cold. My left foot in particular feels like a cold, dead, heavy weight on the end of my leg!

Muscle Spasms, Stiffness and Weakness

This is also an everyday problem for me. My legs are stiff and painful, especially when I get up in the morning or after sitting for a while. Basically, when I stand up, I’m never quite sure what my legs are going to do! I sometimes have spasms and twitching in my left leg. I know I am much weaker than I used to be (but this is partly due to me being less active). I have noticeable weakness in one side of my left hand .

Mobility Problems

There are lots of things that contribute to my mobility problems – issues with balance, spasticity (stiffness), weakness, numbness and lacking confidence all contribute. I feel much safer when using a walking stick, especially on uneven or sloping surfaces. My EDSS (expanded Disability Status Scale) score was assessed as 4 by my neurologist in June 17 and as 6 in November 2018. It was just 1.5 twelve months prior to this. I’m not sure that I agree it is 6 now as although I require assistance for walking, I can still walk on flat uneven surfaces unaided.

Pain

I have some nerve pain on the left side of my body. During my last relapse, this was particularly painful (I’m told it feels like shingles pain) – thankfully it has faded to manageable levels, though has never disappeared. The spasticity in my legs is painful at times.

Problems with Thinking, Learning and Planning

In the MS world this is known as Cognitive Fog or Brain Fog. I know I have this, although it is very hard to assess or measure.

Depression and Anxiety

It is very difficult to NOT be depressed and anxious when you have MS!

Bladder Problems

Thankfully I don’t have bladder problems. During my last relapse I had a common problem experienced by people with MS where I knew I needed to go but couldn’t! This is caused by damage to the spinal cord in the area that leads to the bladder, so the message from the brain doesn’t get through. Luckily this wasn’t permanent, but it remains one of the things I most worry about as my MS progresses.

Bowel Problems

Thankfully I don’t have bowel problems.

Speech and Swallowing Problems

I don’t have swallowing problems and my speech problems are limited to sometimes being unable to recall a word for something (linked to brain fog rather than a speech problem). About 4 years ago I had a period of slight slurring and was aware this was linked to the way the left side of my face and mouth moved.

Balance

For some reason balance isn’t on the NHS list, yet it is a very common problem for people with MS. My balance has got steadily worse over the last 18 months.

Additional symptoms added 18.01.19.

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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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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