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 ?