Tag: spoons

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

GoFundMe

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 💦

❤️

GoFundMe 

34 Having a bad day

When I started this blog, I made a decision that I was always going to be open and honest about my battle with MS.  I find I have good days and bad days and sometimes feel deep despair, but mostly I feel positive and optimistic and look at ways to overcome challenges rather than letting them stop me doing what I want to do.

Today I am having a really bad day, both physically and emotionally.

Last night my lovely friend, Beth and I went to see the wonderful Billy Bragg at the Ritz in Manchester.  Billy was fantastic and inspiring, as always, but I discovered that managing my wobbly legs, in a crowded space, with a walking stick, in the dark is really tricky!  Luckily we managed to get a spot right next to the lighting/sound guy box and I was able to prop myself up for at least some of the evening. 

I had lots of realisations last night – I love live music and was previously a frequent gig goer, but I have been doing a lot less of it recently.  I much prefer to be in the standing area, as the atmosphere is better, but I can no longer tolerate standing up for so long.  By the end of the evening I had shooting pains in my legs, hips and lower back.  I found myself wishing for the last song to come and was upset with myself for feeling that …usually I don’t want the evening to end. 

Beth was dealing with her own challenges (fibromyalgia) so between us we felt ancient! 

Other minor problems I encountered were other people tripping over my walking stick (one person literally kicked it away, almost causing me to fall) and the Ritz being an old building, so the toilets were down some rickety stairs – not good when your legs aren’t doing as they’re told!  At one point, I went to the bar then realised I wouldn’t be able to carry two drinks and use my stick to get back to Beth.  Thankfully she had realised this too and had followed me to the bar.  Thanks Beth xx

The journey home was also challenging – going from the heat indoors to the cold outdoors compounded my pain and the bumpy bus ride didn’t help either! 

I sound like such a whinger, don’t I?!  Hopefully normal service will be resumed soon.

Today I hurt all over and I feel exhausted.  I could have been going for a walk in Macclesfield Forest with Niamh, Sophie and my favourite dog, Odin, but I’m just not up to it.  

I hate that this disease is robbing me of life’s simple pleasures – going to gigs, buying a round, going for a walk.  I hate having to think about what I’m doing on one day as it can impact on what I’m able to do the next (starting the day with a spoon deficit isn’t good!).  I don’t feel ready or willing to succumb to this way of life.

Anyway, I’m going to have a hot Epsom salts bath, then spend the day on the sofa, watching TV and cuddling with my cats …hopefully tomorrow will be a better day.