Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: ME/CFS Page 2 of 15

Yes Television Really Can Be Exhausting

Most people don’t think anything of sitting down in front of the television to watch their favourite program. In fact most consider it a relaxing activity, something they can do while having a rest after a long day at work.

Sadly with M.E. that isn’t the case. Television is actually a very stimulating activity, when you think about it there’s the moving images, the flashing as the light changes and the sound; that’s without having to filter out any conversation going on in the background which inevitably happens in family life.

All of this takes energy for the brain to process. Managing to watch the television in a silent household can be a challenge if you have M.E. At times it is impossible as the images move too quickly, the light from it is too bright or the change of images causes too much of a flashing effect. Obviously sound doesn’t have to be a problem as you have some control over that thanks to the volume control, but still if you’re watching TV with someone who prefers it on quite loud, sound can become another factor that makes watching TV a challenge.

As a result of this I have found it helpful to limit the amount of time I spend watching TV. I think on average the absolute maximum I can cope with is 4 hours; that sounds like a lot but when you’re unable to do much in a day except lie in bed or on the sofa that’s not much time at all. In fact if you think about the last time you got hooked on a boxset of programs, that’s probably what…four episodes? Somehow I suspect if it was a really good boxset you’d watch more than four episodes in a day if you had the time. You’d probably watch them back-to-back too.

I have to be careful and plan what I want to watch, if there’s something I really want to watch on TV in the evening but I’ve already watched four hours earlier in the day then that show has to be recorded or watched on the catch up TV services; recording it is preferred as then there’s no time limit on it’s availability.

Watching more than about four hours of television, or even watching four hours of unbroken television leaves me with a horrendous headache, increased noise and light sensitivity and at times very achey eyes.

So Yes Watching Television Really Can Be Exhausting.

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Battling Pessimism…

I’ve been umming and ahhhhing over whether to share this or not but I think honesty is the best policy. I’m not sharing this for sympathy or pity, it is what it is; a part of my life, and something I have to deal with.

I’ve been in a really bad mindset recently. A place where everything seems too difficult, it feels like everything is against you. A number of viruses, a decline in physical health and reduced cognitive ability really have taken their toll on my state of mind. I’ve questioned almost every aspect of my life; what I’m doing, why I’m doing it, if there’s any point to it.

I’ve been chronically ill for 11 years now, that’s 11 years dreaming of being well, able to lead something close to a normal life. I’ve come close to that a few times but each time relapses wrecked those dreams. In the midst of yet another ‘blip’, which I’m hoping against hope won’t turn into another of those relapses, I’ve been finding it difficult to see a light at the end of the tunnel. Yet I’ve been worse.

It’s like these years of having my hopes of recovery dashed by relapses have taken their toll and I can no longer dare to dream of that. As a result it’s been incredibly difficult to focus on the positives, of which there are still many, I look to the future and all I see is illness. I’m approaching the end of my degree and not only do I have no idea what I want to do with my life but I don’t know if getting a job and working is actually a possibility. I also know I can’t rely on my parents for everything indefinitely. I need some form of income and support.

The future looks fraught with difficulties such as that and I don’t know if I’ve got the fight in me to keep going. I’m exhausted in every sense of the word. I look around and see people my age moving in together, getting married, moving up the career ladder and so on: then there’s me. Trying like mad to finish my degree and recover enough to be able to consider getting a job. Relying on my parents and family in general not just financially but for care; help doing the most basic of tasks.

I’d like to say it’s just a bad day not a bad life, in fact I did think that when this current patch of poor health started at the beginning of the year but as my health has continued to decline and that bad day has become a bad week, then a bad month it’s getting harder and harder to keep believing that this too will pass.

Coping with a decline in health on it’s own is difficult enough but I’ve also started the most challenging module of my degree thus far. I’m ashamed to admit I have actually considered quitting. But I’m not going to do that, I’ve got to at least try and finish what I started in 2010. The road has never been easy and the next few months look very daunting but I’ve got to give it a go. Otherwise that’ll be one more dream dashed.

To those of you who’ve been there supporting me these past few weeks, thank you. I am slowly getting myself back into a more positive mindset but it’s going to take some time. I’ve not given up all hope by any stretch of the imagination but I am finding things tough. As things slowly start improving again and the recovery process begins I hope I’ll get back to my usual more optimistic self!

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Time for a Change

Some of you will already know this but for those of you who aren’t aware, the beginning of this year hasn’t been a particularly easy ride as my health has once again declined. As a result I’ve taken a bit of an absence from social media, only really answering messages (I still poke my head in there occasionally but nowhere near as much as I used to).

This recent decline has been a little different to most I’ve suffered. Usually my mobility is the first thing to suffer; my legs get weaker and I struggle to get around the house. That hasn’t really happened. I’m still managing to get around the house ok with the help of furniture at times.
Instead the fatigue has reached ridiculous levels, doing even the most basic tasks leaves me utterly exhausted. Noise sensitivity is becoming a real difficulty; any background noise leaves me unable to follow a conversation and results in a headache. My hands and arms are also suffering, stupid little things like opening the shampoo bottle have become more of a challenge; what should be a 10 second task can take me anything up to a minute to complete! The recent cold weather has seen the pain in all my joints increase significantly too.
Washing and brushing my hair have also become great challenges, prior to this blip I was managing a shower to wash my hair once, often twice a week. Now it’s a massive effort to shower and wash my hair once a week. I’ve gone days without brushing my hair or been forced to ask one of my parents to brush it for me.
And so I’ve made what some might consider a radical decision, to have my hair cut short in a pixie style. This wasn’t a decision I found easy to make, I love my hair long, being able to tie it back and generally do stuff with it but I’m struggling with it so much yet again that for now at least I think short is best. It should be easier to wash, brush and generally manage given my current energy levels. It’s shorter than I’ve gone previously during these years of illness.

Hopefully it’s a decision I won’t regret. Despite some nerves (OK a lot of nerves…) about getting it done, I’m excited for the benefits it brings; that little bit of independence I’ve felt slipping away in recent weeks. For that alone going short will be worth it!

One Week On…

I don’t regret it. I’ve had a few days of being unsure as to whether it’s the right style for me but it’s growing on me. (No pun intended!) It is SO much easier to wash and brush it’s remarkable!

I can’t stop myself styling it though. To the point I’ve actually bought some wax to hold it in place. It won’t take too much energy and might stop me rearranging my hair each time I go past a mirror! I never did this when it was long but now it’s so easy to do I can actually do it!! Thus far it’s not a decision I regret, in fact despite a few doubts, it may well be one of the best decisions I’ve made. In case you’re wondering what it looks like here’s a photo:

My new ‘pixie’ do!

I hope to update this blog again soon, but as my next uni module commences it could be a while between posts. There should however be updates galore on my study blog over at:

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2016: Bring It On!

Overall 2015 has been a good year, I’ve achieved things I never imagined. Sure there’s been some pretty terrible lows but I’ve got through them.

This past year I have:

  • Managed a weekend away, the first in I can’t remember how long!
  • Decorated the living room, it took me the best of of seven months but who counted?!
  • Strengthened my muscles, as a consequence of decorating, walking has become easier as I’ve built up the muscles while standing painting for short periods.
  • Not only passed, but got a distinction in my Open University module!
  • Baked cakes and cookies.
  • Prepared my own meals, some in bulk so they can be frozen and reheated when required.
  • Been out for a few hours each day for five days in a row without any major setbacks.
  • Spent a day as a Princess and raised £225 plus £40.75 GiftAid for Invest in ME

And that’s just the things which stand out!

For 2016 things will be a bit different. In February I begin 16 months of solid study to complete my degree. Between February and September I shall be studying at least 10 hours a week. This means most other activities will have to be put on hold as I try and complete the final two modules of my degree (Don’t worry they’re not running simultaneously! But I won’t be getting a break between modules.).

I hope to continue building up my walking so I can manage that walk up the local corner shop on crutches and I definitely plan on being involved in Team Princess again if I can. I think for everything else I’ll have to see how things go and base decisions on how well I’m doing as the year progresses. I’m not going to rule anything out since I can’t predict the future. A trip to meet some friends I’ve made online would be wonderful if it is possible. Delving into the world of dating would be another step towards doing something ‘normal’ for a person my age but I’m not sure I’ll have the energy while studying so much or the courage to go for it. We wait and see.

In the meantime I wish every reader a Very Happy New Year! I hope it brings better health and happiness to each and every one of you.

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