Weary

Hello there,

This was supposed to be a post all about invisible illness awareness week…and I am halfway through writing it, it’ll be up soon, but the last few days I have just been feeling so very weary of everything.

I’m so tired of not knowing when all this pain and suffering will end. I’m tired of having to fight all the time and not ever winning.

Nearly 4 years on, the bottom line is I’m not better…and I’m not getting better…I’m getting worse.

I’ll be alright…I always am…I just need a few days to allow myself to be sad. Then I’ll pick myself up and carry on.


Until next time, Rhosyn.

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Awkward Encounter

Hello there,

So I had my first “awkward wheelchair encounter” the other day…

Me and my parents had decided to go to local picture framers to get a frame for an art print I got for my birthday (in June…we’re only just getting around to it, bad I know).

This was going to be my first experience of “indoor wheelchair use”, (so far I’ve just been wheeled around outside). I was a bit anxious about everything being accessible, but I needn’t have worried, the women who served us was so helpful and understanding.  She lay everything down on the floor so I could see it because the counter was too high, and she even opened the door for me on the way out.

What I didn’t count on though was seeing someone I knew. I say that in the loosest sense of the word. It was a women whose child went to the same school as me, and my mum knew her a bit. I don’t think I’ve ever spoken two words to her. She recognised my mum, and of course started asking her about me and my sister, what we were doing, whether we still lived at home etc. My mum obviously explained that I was still living at home because I wasn’t well, and it was at this point that she recognised me.

I was hoping for a quick acknowledgment and then escape, and I think my mum was too, but oh no…the women then preceded to exclaim “oh I didn’t recognise you! how come you’re in a chair then?”

giphy

When I uncomfortable mumbled that I had M.E. she then said “oh no…how long have you had that for?”….when I said 4 years she then carried on with “oh dear…such a shame”…

I felt so awkward and embarrassed at this point, all I wanted was the ground to swallow me up.  Luckily at this point I had to go and pay for my frame so we could escape. The journey home was a bit quiet. I think my mum found it almost as difficult as me, she’s always struggled with the idea of a wheelchair.

I knew that I’d have those awkward experiences when I first started to see people when I’m in a wheelchair, and I know that each time it happens it’ll get easier, so I’m glad I’ve got the first one out the way.

On another note I wanted to say thank you so much for all the responses I got to my last post. I got some great tips on how to alleviate my pain, I shall be trying them out in the coming weeks. I’ll let you know how it goes.

Until next time, Rhosyn.

Painful Problems

Hello there,

So over the last, well…about a month, my day to day pain levels have increased a lot. Some days it’s just bearable, on others I can’t really move.

Despite being housebound and unable to walk up a flight of stairs without feeling like I’ve run a marathon, my one consolation was that my pain levels were relatively low, it was manageable. That seems to have gone now, what I thought was just a few bad days has turned into bad few weeks and into what now seems to be my new normal, my one ray of sunshine is gone. It’s been an incredible draining few weeks.

I’m sleeping even worse than usual, which has effected my energy levels, and it’s also really affected my mental state. I’ve been surprised how mentally draining being in this much pain constantly is (I don’t know why I’m surprised….but I am). Everything is so much more of a struggle, and because I can’t read or even watch TV because it’s too much, I’ve got nothing to take my mind off it.

giphy-2

I went to the doctor but all she did was say she was going to write to the M.E. “specialist” again (I’m using air quotes because they really don’t seem to know anything). I know something else needs to be done, because my regular pain killers just aren’t doing anything anymore.

I’m reluctant to ask for stronger pain killers from my doctor for a number of reasons. Firstly I’m extremely sensitive to medication, I will get side effects from anything new I take and it will take me weeks to get over them. Secondly I know a lot of pain killers cause stomach issues, this is the one area that I’ve actually made progress and I really don’t want to go backwards. And lastly…well I don’t want to admit to myself that I’ve, yet again, got worse. I’m going in the wrong direction. I should be getting better…

I would really appreciate any advice.

Until next time. Rhosyn.

Contact Me

Hello there,

This is going to be another quick post. I just wanted to say that I’ve added a “contact” page to the blog, you can now email me at mychroniclife1@gmail.com. So if you have any questions, feedback, topics you’d like me to write about or you just fancy a chat then I look forward to hearing from you 🙂

I also wanted to say thank you for the great response I got to my previous post (8 things I wish I knew when I first got ill) it really seems to have resonated with a lot of people, and it makes me so happy that what I write is able to do that (somehow haha).

In other news my sister moved back to university today, so I’m going back to being by myself most of the time again (my parents both work long hours). It’s definitely going to take some getting used, she’s been back for 3 months, so I’m used to having her around. Although she’s coming back for the day next Wednesday for a dentist appointment, so I’ll see her very soon.

Anyway, I’m off to go and attempt to tidy up (seen as I have very little energy this involves moving everything on the floor into one big pile haha)

Until next time, Rhosyn.

8 things I wish I knew when I first got ill

So I’m just in bed resting and feeling depressed after yet another fruitless doctors appointment, and I was thinking of all the things I wish I knew at the start of this. Then I thought, why don’t I write them down so that other people WILL know them, and just maybe it might help someone. So in no particular order here are my top tips for the recently diagnosed chronic illness warrior.

1.) Don’t dive into anything right away.

Make sure you give yourself time and space to consider which path is right for you, because there will be many, and you can’t do them all at once. I know all you want is to get better as fast as possible, but if you dive straight in without considering the consequences you could end up doing more harm than good. That’s what I did.

2.) Let yourself grieve for your old life.

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8 things I’ve been loving in July and August

Hello there,

So this has been a long time coming! haha. I wasn’t well enough to write about my favourite things last month, so this a bumper edition. Enjoy!

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New Design

Hello there,

This is just a quick post. Firstly to say that I’m currently writing my (extra long) favourites post from the last two months (thats why it’s extra long). Those sorts of posts always take the most energy, and so take a bit longer, but it is on its way.

I was planning on writing it yesterday, but I woke up in so much pain that I couldn’t get out of bed. My spine, back and shoulders were in agony, and painkillers barely touched it. I was losing it a bit by the end of the day, but luckily I woke up and it had gone back down to my “normal” pain levels.

It’s weird how some days you can wake up and feel like you’ve been hit by a bus for no reason. Seriously…I didn’t do anything the day before…anyway, what can you do?

The second thing I want to say is, as you might have noticed, my blog has a new beautiful design! I wanted something more colourful and fun. I chose the last one really quickly and didn’t put much thought into it, but this one took me so long to choose..seriously…it’s all I’ve been doing this afternoon, but I really love it, it’s so pretty!

Let me know what you think.

Until next time. Rhosyn.