2 years on

The last few days haven’t been too bad, been really tired in the evenings though.

Managed to sit in the garden today for half an hour! Very good for me, really enjoyed the sunshine.

Today is a bit of a weird day. It marks two years since I (finally) got diagnosed with M.E.

I was so happy and relived on that day to finally have a name for what was going on, that I didn’t stop and appreciate that magnitude of what had happened.

It’s similar actually, to when I got put on antidepressants at the start of my illness. All the tests I had done had come back all clear, and so the doctors decided that I was depressed and that was why I felt so ill. I got asked if I wanted to be put on medication, and I immediately said yes, because I thought that would fix all my problems.

I guess that’s just my personality, I’m so eager to solve a problem I jump right in without knowing the full consequences of my actions.

And here I am, 2 years later, no better than when I got diagnosed. If anything I’m actually worse.  No that’s not quite true actually. Physically I’m worse. Mentally I’m much better; I’m stronger, less depressed, more happy in myself than I ever have been. So that’s a good thing.

I actually feel as if I’ve come in a full circle. After I first got diagnosed there was a period of about 6 months where I greatly improved. Then I did too much too fast (tried to go back to university), had a huge setback, and I’ve never recovered back to that level since. However I feel like I’m on an even keel at the moment, which is a good starting point for improvement.

Onwards and (hopefully) upwards. Until next time. Rhosyn.

I survived!

Yesterday morning was spent in complete dread, and the one good thing about dreading something so much is it’s never as bad as you think it’s going to be. No I didn’t enjoy it, no I didn’t find it very helpful, but I survived! 2 down 3 to go! It was made bearable because the other people on the course are really nice and quite chatty, which is good for me, because I’m not chatty, so it balances out. Plus this session quite a few people hadn’t turned up, so it was a smaller group which I find easier.

Feeling pretty tired today, but not too bad other than that. Quite bored actually, which as I think I’ve said before, I see as a good thing because it means I’ve got the energy to feel bored!

Something that cheered me up yesterday was that my ASOS order arrived. It was quite a big one, so I’ve not had the energy to try everything on yet. But one thing that is already a firm favourite is this jumper.

Do you see any similarities? 😉

My mum’s had to take my cat to the vets today because he’s cut his paw. He’s basically spent the last two days doing nothing but sleeping, but he’s looked ever so cute doing it!

Until next time. Rhosyn.

Dreading tomorrow

Really not been feeling good the last few days. Very tired and pain all over.

My parents got back from holiday, can you guess where they went? 😉

I was in two minds whether to go to yoga yesterday because I felt so bad, but I did, and I’m glad I went. It didn’t make me feel miraculously better, but it helped a bit.

I have to go the hospital tomorrow for another “group session.” I wasn’t feeling too bad about it, but then I remembered I had a “workbook” to fill out (it feels like school). I looked at the first question; it was asking me about what I’m doing to “manage different areas.” There were 8 sections…I could only fill out 3. The rest were areas that are beyond my capability.

They were things like “communication – being able to say no”, well thats easy I have to say no to everything, “making sure you have planned rest periods”, again easy…I have to rest all the bloody time, and “balance of activity; enjoyable vs. must do”…well I only have the energy for the bare minimum, “enjoyable things” aren’t really on my radar.

It just made me so angry…again, and now I’m dreading tomorrow. I just feel like they don’t understand my needs at all, they’re just lumping me into a group because its easier for them. I feel like they’re telling me “this is where you should be 2 years after being diagnosed.”

If it’s really bad tomorrow I’m going to email the consultant and air my views. I think they’re valid.

Off to bed to have an early night now.

Until next time. Rhosyn.

Pain pain go away

I’ve been in a lot of pain the last few days. Had really bad headaches radiating all down my neck and into my back, accompanied by vertigo when I stand up. Dosed myself up on painkillers, but that has the side effect of turning me into a zombie, have to choose between the lesser of two evils.

The photo accurately depicts how my head has felt the last few days, it’s from one of my favourite twitter accounts, Medieval Problems.

As a result I’ve spent most of the last few days in bed. Although there have been moments when I’ve been feeling well enough to do a bit of online shopping, I treated myself to a few bits from the sales.

Today I’ve been feeling a bit better, I even managed to sit in the garden with my sister for half an hour! In the shade…but still, it’s an achievement!

The weather was incredible.

Until next time. Rhosyn.

Some good news at last

So in my last post I talked about how I was in a “good phase” and was just waiting for it to come to an end? Well…it happened…the day after I wrote that post! Talk about tempting fate haha.

I had a really terrible nights sleep that night and ever since then my energy levels have been lower than usual and I’ve had really bad headaches. Yesterday I was so tired in the afternoon I was struggling to stay awake at all. It’s confusing because actually the last couple of nights I’ve slept well, I think my body just doesn’t know whether it’s coming or going.

Today though, has been a good day because I got some very good news in the post. I know I’ve talked in previous posts about applying for benefits, and that a couple of weeks ago I had a medical assessment. Well, I got the results today. This particular benefit, Personal Independence Payment (PIP for short), is split into two parts. The first part is “daily living” which is about how you manage daily tasks such as washing, dressing and cooking. The second part is “mobility” which is about your ability to get around.

I got awarded the mobility part, but not the daily living part. I’m not completely happy with it seen as I can’t cook for myself, and washing and dressing are so tiring they don’t happen a lot of days. However I think it’s best to just take what I’ve been given. The appeal process is so exhausting, I don’t think I have the energy for it.

The best part is that the payments are backdated to when I first applied (last November) so I’ll be getting quite a bit of money. This news has totally made my day. I’ve been feeling pretty crappy the last few days, but this has cheered me up. It means I can buy some nice things for my newly decorated room, and hopefully a wheelchair, which would completely revolutionise my ability to leave the house.

I feel incredible lucky to live in a country that will (despite the Conservative Party’s best efforts) look after me when I’m ill. Hopefully when I’m better I’ll be able to repay it all with plenty of taxes.

The weather has been amazing the last few days, but obviously I can’t really enjoy it seen as I can’t sit outside for more than 10 minutes without getting a blinding headache. I think not being able to go outside properly is one of the hardest parts about being so ill, this is why I need to get myself a wheelchair!

This was my view!

Until next time. Rhosyn.

A Good Phase

Quite a lot has happened over the last few days.

I had both yoga and a dentist appointment on Tuesday, which was a lot for me! Luckily the dentist was all fine, although he’s worried about my one remaining wisdom tooth, but I’ll cross that bridge when I come to it.

On Thursday I had to go to the M.E. clinic at the hospital for a “group session” with other people who have the same disease. I never really enjoy them, and the last time I went it actually made me really upset and sent me into a bit of dark patch depression wise. So I was kind of dreading it. It wasn’t great, but I survived and it hasn’t made me feel too much more depressed than usual, which is a big relief. I think knowing what to expect helped a lot, and I’m feeling a bit better energy wise than the last time I had to go, so it made it easier to deal with.

Today I got to have some actual human interaction! Three of my friends came over to see me before they all go back to university this weekend. It was so great to see them, to chat and laugh and just have a good time. I hadn’t seen any of them in months.

Despite have a pretty busy week I don’t actually feel too bad, I’m definitely in a good phase at the moment. I just hope it lasts!  I hate that I’m just waiting for it to end, waiting for me to wake up one morning and not being able to get up. I want to believe that I’ll still feel good tomorrow, but history tells me I shouldn’t. I guess I’ll just have to try my best to think positively.

Dumbledore ❤

A while ago in a post I talked about a potential treatment that involved a course of fatty acid supplements. Well I decided to give it ago and I started today.

I have to take 4 tablets twice a day. I’ll report back and tell you how it goes, hopefully it’ll help.

Until next time. Rhosyn.

A Hard Day’s Night

I think I have been underestimating how hard the last week or so has been, what with the medical assessment and packing up my room, it’s been incredible exhausting both emotionally and physically. I tend to forget that I have to look after my mental health just as much as my physical health, they’re both equally as fragile.

It all came to head during my counselling session on Thursday, I was trying to explain why it had been such a difficult few weeks, but was practically hyperventilating, and speaking so fast she couldn’t understand me. Luckily my counsellor helped calm me down and we managed to talk a lot of it out, which was really good.

The problem was I couldn’t have a “rest day” the next day as I would usually because it was the day I moved out of my bedroom and into the spare room, my room is now completely empty and my dad’s redecorating it as we speak.  Although it was absolutely exhausting (definitely overdid it), and the last couple of days have been really bad, it’s finally done, and I don’t have to worry about it anymore.

The last couple of days have been spent in my pyjamas, trying to relax as much as I can. I’ve been watching Friends and reading.

  You really can’t beat it.

Easter is kind of a tricky one for me, seen as I can’t really eat chocolate at the moment, so my parents got me some earrings instead. Hopefully I’ll have a bit more energy in the next few days, I’m going to need it because I’ve got a busy week. I know I’m making a mistake by doing too much, I know I’m going to pay for it, and I know I should know better…but somehow I still don’t. Until next time. Rhosyn.

A Loaded Dice

So the last few days have been tough, really tough.

I had my first (out of two) “medical assessment” yesterday for my benefits. It was alright, not brilliant, but not bad. I didn’t feel like I explained fully the extent of my cognitive symptoms, or said enough about my “getting out and about” as she put it, is restricted. I mean it’s non-existent, thats how it’s restricted!

The examiner was asking me questions that were designed to have yes or no answers, but there is no way I would be qualified as eligible for the benefit if I did say yes or know, they want every tiny detail. Or she was asking questions so broad I couldn’t hope to give a full account, such as “how does your illness effect you?” Well only every aspect of my life, every waking minute, every thought I have, but apart from that no, I hardly notice it!

I just feel like the dice is loaded against me, and against anyone who’s in my position. I’m being punished for having an chronic incurable illness, punished by a government who is only interested in their own personnel bank balance, who doesn’t give a damn about whether people are starving, in poverty, or actually die because their benefits have been cut and they have no money to live off. The politicians say it’s to root out benefits cheats, but the money spent on benefits is an absolute TINY fraction of that lost in tax avoidance by big businesses. It makes me nearly cry at the injustice!

I have to see their smarmy faces on the TV and in the newspapers every day whining about how the economy has grown, how inflation and unemployment are down and how we’re better off than we were five years ago. What utter bullshit. The NHS is in crisis, we have made no progress towards a greener economy, tax evasion is as rife as ever, I could go on and on and on. I honestly do not know if I could live with another 5 years of Tory government.

It just makes me so bloody angry! As you can probably tell from reading this, haha. Anyway, I feel much better now for having let that out. Hopefully tomorrow I’ll wake up in a much more positive frame of mind.

Until next time. Rhosyn.