brain fog – Another MS Warrior

110 Ups and downs

Well it’s been another week of ups and downs here at Warrior Towers. After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday. It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education).

Unfortunately, by lunch time, I was struggling. The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.

By the afternoon, I was struggling to follow conversations and to process information. “Brain fog” is a real and frightening symptom commonly experienced by those with MS. The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.

I went home on Monday and cried. Never have I felt such a failure …and a fraud. I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.

I decided not to go to work on Tuesday. My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.

Like all of those working in the public sector, we are over stretched and under staffed. I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job. Thank you to my wonderful team for everything ?

I have spent the week mostly resting and not doing much at all. The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me! I have managed to relax a little and to live in the moment rather than worrying too much. I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level.

On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified! Small things, but both lifted my spirits immensely. Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.

A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once. I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet. I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future. I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job. With all these phone calls and appointments, being unwell is becoming a full time job!

Today, I received a letter from the DWP. I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment. With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP! I am delighted with this outcome. For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive. I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall. So the week has ended on a positive note and I’m very grateful.

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Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago. Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.

The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund! Jimmy is currently sporting a rather impressive beard and this too will be shaved off! To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.

This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village. Thank you so much to Sheila and Alan for their support. I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.

The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund. They have been persuaded to delay this until spring, when the weather will hopefully be more favourable. More info on this at a later date.

Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.

We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail.

Read more about MS “Brain Fog” on the MS Trust website here … MS Trust

you can find out more about the Calm app on their website … Calm They are also on social media.

You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).

Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).

Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).

Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).

Thank you once again for your ongoing support. The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?

GoFundMe

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

GoFundMe

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.