work – Page 2 – Another MS Warrior

63 Work life balance

Today has been a very strange sort of day for me. I work in education so have school holidays (I know I am very lucky). During term time, I work hard and over recent months have started to struggle. I found my MS fatigue and other symptoms impacted on my daily life and it was getting to the point where I was cancelling social events and spending all my non-working time trying to recover from the working day.

Towards the end of last term, my life consisted of work/eat/sleep and not much else and it started to get me down. In December, I made the decision to reduce my working hours to 4 days per week, instead of 5. The reduction in income is a bit of a worry, but I am hoping to achieve a better work/life balance and to have time and energy to see friends and to manage everything else.

So today was my first non-working term time day! I didn’t do anything exciting – a bit of resting, a bit of cleaning and sorted some paperwork – but it feels good to be entering the weekend with a little more energy and with a few jobs out of the way.

Tomorrow, George will be bravely taking on the challenge of the Runthrough Victoria Park Half Marathon, despite suffering a chest infection, which has impacted on his training. Good luck George! Please take it easy and just get yourself over the finish line in one piece!

JWe are not quite ready to give full information just yet, but I hope lots of you will come along to our evening fundraising event on Saturday 23rd February. The venue is the beautiful Bonis Hall in Prestbury.

We are in the process of organising music, food and drink and hope it will be a fun night for everyone. If you can help in any way, please do get in touch.

We are also planning on holding a raffle and are now in the process of collecting prizes. Do you have anything you could donate? Unwanted Christmas gifts? Access to services? Do you know anyone associated with sport or TV who might donate signed items or event tickets?

Many thanks to everyone who has already offered items – I will be in touch soon.

Thank you again for all your help.

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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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53 Thank you ❤️

I just wanted to write a quick update to say thank you for all the supportive messages I’ve received over the last couple of days. I really do have some wonderful people in my life xx

I must admit, I really didn’t feel like going anywhere Friday night, but once I had got myself ready and out, I was so glad I did. I work with a lovely team of 13 who are kind and supportive colleagues, but also great friends. We are very busy at work and in and out of the office at different times, so it can sometimes feel a little chaotic. It really was lovely to be able to sit and chat and enjoy the start of the festivities together.

I have included this photo as I think it is the first I have taken with my clumpy boots and walking stick. I would have avoided taking this a few months ago, but writing this blog has helped to see that it is much better to be open about things, rather than hide away.

A highlight of Friday evening is that, after over 30 days as a tee-totaller, Julie got to have her first alcoholic drink! She also got to try a porn star martini for the first time …I think she rather enjoyed it!

Thank you for doing this for my funds Julie xx

After my stressful day and night out on Friday, I was totally out of spoons on Saturday. I spent the day on the sofa, resting and recovering and felt much better today.

I managed to get out of the house with Niamh, Sophie and assorted dogs this afternoon and to give my trecking poles another outing. A bit of fresh air and exercise was just what I needed …thanks girls xx

I have also managed to do some research on the neurologist that I am seeing on Wednesday. Although I have spoken to one person who had a bad experience, I also heard from others who spoke highly of him and his knowledge of HSCT. So maybe the situation isn’t as bad as I thought after all. I’ll write more about that next time.

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46 Blue badges and red tape

Tomorrow I have an assessment for a Blue Badge. I don’t actually want a Blue Badge, but have found myself applying for one and being invited for an assessment.

In my daily life, I am trying to continue as “normally” as possible. I also want to keep moving as much as I can and feel no need for special parking privileges.

But then there’s parking at work …

I work for my local authority and one of the biggest issues all who work there have, is the lack of parking. We basically have two choices – pay £50 per month for a parking space or park 10 or 15 minutes away and walk. There’s an extra issue here as my job involves travelling to meetings at various places, so I can end up in and out of the office during the day, sometimes carrying paperwork, laptop etc.

Until now, I have always chosen to park and walk – I didn’t want to pay for parking and I figured that those short walks were good exercise. But now walking to and from my car for work is becoming quite a problem for me. All the roads close to my work place are sloping or uneven or both and quite a challenge for someone with poor balance and wobbly legs! Throw a bit of windy weather and Northern rain in the mix and my journey to work in the morning can be like an endurance challenge!

I have posted before about how fatigue affects my daily life and the need to conserve spoons (energy) Some days I am so out of spoons by the end of the working day that I struggle to manage the walk to my car. I don’t feel safe on days like this – my right foot drops sometimes and catches on the ground, I sway when I stop at the kerb to cross a road and sometimes feel vulnerable as I feel so weak and exposed.

Under the Disability Discrimination Act, I am allowed to ask my employer to make reasonable adjustments to support me to be able to work. I’ve had a couple of appointments with occupational health and discussions with my team manager and am well supported – I really value all the support I have received from my team and manager. The only additional adjustment I have requested is to be provided with a parking space in the car park beneath the building where I work.

The response from HR was that I am already provided with parking …I just need to pay for it! I have argued that this is unfair – I choose not to pay for parking but my disability is forcing me to do so, but they weren’t for budging.

I occasionally have reason to walk through the car park and it’s never full (because most staff are choosing not to pay for parking), so it’s not as if providing me with a space would cost them money or do someone else out of their space.

My manager looked at the possibility of paying for my parking using team funds but was prevented from doing so by (yes, you’ve guessed it) …HR. HR then advised me that the only way I could prove I needed a parking space provided was to get a Blue Badge.

I decided to look up the criteria for being allocated a Blue Badge to see if I was eligible and discovered …there aren’t any! Responsibility for issuing Blue Badges lies with each local authority and they can decide their own criteria and assessment process.

So, now I find myself attending a Blue Badge assessment, where I have no idea of the criteria, which is being carried out by someone from the local authority …the same local authority that is my employer, who have already refused my parking request!

So, Blue Badge assessment, here I come! Let’s hope I pass! …or should that be fail??!

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Ask me a question …

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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