Living Life, Within the Limits of Chronic Illness

Tag: 2016

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: http://lifewithmedoingadegree.blogspot.co.uk

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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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