The Prospect Of September…

Hello there,

This time of year brings up a lot of emotions for me. For the large majority of my life these next few weeks would have been a mix of excitement and nervousness at the prospect of starting a new year at school, college, or university.

I always liked school, and I don’t care if that makes me a nerd.

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I loved learning new things, and although school was often spoilt by other (mean) people that were there, on the whole it was a good experience.

As a result, education was always a huge part of my personal identity and of the future I imagined for myself. So when it was taken away due to my illnesses it was just as hard as losing other things, such as my social life, if not more so. It was incredible painful at the time, and for a long while afterwards.

Even though it’s been two years since I was in education, I still get that sense of a fresh start when it comes to the beginning of September. I find myself “phantom shopping” for stationary and clothes that I would buy if I was going back.  My sister, cousins, and lots of my friends are preparing to start a new school year, and I still get a sense of sadness that I’m not.

However it makes me all the more determined to go back to education as soon as I’m better. In fact it’s the first thing I’m going to do!  In the mean time, I’ve found new ways to learn; I read a lot of books, I watch documentaries and films, and I count myself very lucky that I’m able to do all those things! I’m determined to use this time to grow as a person, it’s that that keeps me going despite everything.

Until next time. Rhosyn

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Slightly Easier

Hello there,

So…I know the last month or so I haven’t been blogging that much. I’m sorry about that. To say these last few weeks have been difficult, is an understatement. They’ve probably been the worst I’ve ever felt in my 3 1/2 years of being ill.

BUT, and I’m tentative to say this, I seem to be coming out of it. The last week and half has definitely been better. I’ve had the tiniest bit more energy. As I briefly mentioned in my last post, having that tiny bit more energy makes everything just so much easier. So much so that I’ve been on a bit of a high because I’ve been enjoying it so much.

The best things about having slightly more energy:

  • My brain wakes up before midday, so I can form coherent sentences in the morning.
  • I can shower with more regularity.
  • I don’t feel like I need to crawl if I walk to the bathroom.
  • I can make my own lunch.
  • I can eat dinner downstairs with my family some days instead of upstairs in my room alone.
  • I can have my friends visit for an hour or so.

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You see, life is just a bit more bearable. Hopefully this good phase will last a while, I really need it.

Until next time. Rhosyn.

Good, But Bad News

So physically I’ve not been too bad the last few days, which is really great. I’ve had the tiniest bit more energy. Honestly it makes everything so much easier when you actually have the energy to hold your head up.

However…in other respects the last week has not been good. My grandma got taken into hospital last Thursday, and diagnosed with cancer on Friday. She’s very very ill. My parents went straight up to see her on Friday and came back Monday night.

It’s all very complicated because she’s also got a blood clot on her lung and so much swelling in her chest that her airway is really constricted. She started chemo yesterday, but thats just to reduce the swelling in her chest so they can do an accurate test to find out exactly what they’re dealing with.

Basically we have no idea whats going to happen…

I hate hate hate hate that I’m too ill to go and visit her…the guilt I’m feeling is huge.  All I can do is send her texts every day and care packages to try and make her more comfortable. Me and my sister sent the first one off today with lots of lovely things in, so hopefully that’ll cheer her up a bit.

I’m not really sure how I feel about it all yet, it’s all been a bit of a blur. I think because we don’t know exactly what we’re dealing with, it’s impossible to come to terms with. That or after all I’ve been through I’m just numb to bad news.

Anyway, all we can do is wait and see.

Until next time. Rhosyn.

Out And About

So I feel like the last few posts on here have been somewhat…well…depressing.  Sorry about that, that’s definitely not my intention! It’s just been a pretty difficult time the last few weeks, and I don’t want to lie to you all and pretend to be happy when I’m not.

However I’m hopeful that things will start to look up now so I wanted to share a positive experience that I had yesterday.

My aunt and cousin are staying this week with my grandparents and yesterday they all came over to our house. They all went out to have a walk around, go to a museum and get ice cream. Usually that would mean I would have to stay behind all by myself, but not any more now I’ve got a wheelchair! Ok, so I only had the energy to go for the ice cream (let’s be honest, the best part haha), but it was still so lovely to get outside, be pushed around for half an hour and see something other than the four walls of my bedroom!

I got to see one of the Sean the Sheep (from Wallace and Gromit). There are 70 Seans all around Bristol, each one  decorated differently. They’ve done this in previous years with Gorillas and Gromits, both were hugely successful. Then at the end they’re all auctioned off for charity. If you’re interested you can click HERE to find out more.

Anyway this is the one I saw.   It was pirate themed because we were at Bristol Docks, which used to be a hub of trading many years ago.

When we got back home, after a short lie down I was able to go back downstairs and sit and chat with everyone. I felt so happy and content afterwards it was great. I also got some great presents from my cousin and aunt, this being my favourite:

They know me very well 😛

 I’ve been really really paying for it all today though, but I wanted to battle through and write this blog post.

Until next time. Rhosyn.

The Living Death Disease

Yesterday was “Severe ME Awareness Day”. Quite ironically, I was too ill to post, so I’m doing it today instead.

25% of people with ME have it severely. Doctors would class my ME as severe, because I can’t leave the house, and spend the large majority of my day in bed. However I consider myself very lucky that I’m not bed bound, paralysed, in unbearable pain, and need to be fed through a tube. That is the reality for many people with this illness.

They live in darkened, silent rooms, because they cannot bear the light or noise. Imagine that…living a dark and silent existence…I can’t imagine it, and I’m sure most of you reading this can’t either.

Another reality is that this disease can be fatal.  Part of severe M.E. awareness day is remembering those who have passed away as a result of this illness.

A recent study in Denmark (link HERE if anyone wants to read about it) found people with M.E. have a lower quality of life than people with cancer, MS, schizophrenia, rheumatoid arthritis, diabetes, and people who suffered a stroke.

To quote directly from the article “schizophrenia is one of the last diseases I would wish on anyone, but people with schizophrenia scored 21% higher in their QOL (quality of life) scores than people with ME/CFS”.

When you take that into account, the fact that ME receives the same amount of funding for medical research as hay fever (yes! You read that right!) really is beyond belief.

I’m going to stop there, because I can feel myself getting worked up, and I don’t have the energy for that. I’m going to end with a selection of tweets that I saw yesterday on the Severe ME hashtag.

  



Until next time, Rhosyn.

The Worst

So this post was supposed to be a favourites post about all the things I’ve been enjoying in July. However, I’ve been completely out of action the last week. I’ve been more ill than I’ve ever been, confined to bed, only leaving it to go to the bathroom and brush my teeth.

 My cat’s been keeping me company.

It’s been awful. That’s the only way I can describe it, and the worst past is I don’t even know why this has happened. I don’t have the energy to think about anymore though, and whats the point? There’s nothing I can do except wait it out.

Luckily this afternoon I finally started to feel a bit better, I managed to have a quick shower. I know that was probably a mistake, because it’ll be overdoing it, but I do feel better for it.

Anyway, this is just a quick update to explain where I’ve been. Hopefully I’ll start to feel better soon.

Until next time. Rhosyn.