The Last One

I’ve been absent for a whole week now! Sorry about that, it wasn’t intentional. I’d like to say it’s because I’ve been busy doing lots of things, but sadly that’s not true.

I did manage to go with my parents to visit my grandparents on Monday for a couple of hours, which was nice, but other than that I’ve been stuck in bed in a “bad phase.” I can almost hear you thinking “I swear she’s always in a bad phase”, I know…and I agree with you. I didn’t leave my bed on Tuesday. Wednesday was a bit better, I managed to shower, which although completely exhausting, does make me feel much less gross! haha.

Yesterday was an important day. It was the last “group session” of the M.E. clinic that I had to go to do. To say I’m glad it’s over is an understatement. I did enjoy meeting and talking to people who could understand how I feel, but I’ve had it hanging over me for so long because I’ve put it off so many times, and now it’s gone, it’s done and I never have to think about it again! PHEW!

The whole of yesterday was very exhausting. On the way there I had the bumpiest taxi ride in the world! I was being shaken around so much that by the end I didn’t know if I was going to throw up, pass out, or both! Luckily I managed not to do either, and almost fell out of the taxi when I got there. I felt so ill, I honestly didn’t know if I was going to be able to stay, but I had no way of getting home without going in another taxi, so I sat on a bench outside for 10 minutes, took some deep breaths which made me a bit better, and then went inside.

I didn’t say much during the session, I was too exhausted. They talked a lot of setbacks. There was a picture of a cliff, and someone at the bottom having fallen off, this represented a setback. Then there was a ladder reaching up the other side for the person to climb up to get out, each of the rungs was labelled with something that can help you overcome a setback. Things such as; rest, pacing, asking for help, saying no etc. I tried to explain how I felt my ladder was just getting longer and longer, and that I’m actual a lot further away from recovery than I was when this all started…but they just babbled on about how I needed to pace myself, and plan my activities. WHAT ACTIVITIES???? I CAN’T DO ANYTHING!

Sorry for negativity in this post, but I just needed to get it out of my system. It’s been stewing away inside me since yesterday, and as a result I didn’t sleep at all well last night. Anyway, like I said, it’s done now and I don’t have to think about it again. My sister’s coming home for tonight and tomorrow, so that’ll be nice.

Today I’ve mostly been in bed watching Roland Garros, trying to forget about yesterday. I’ve not been very successful yet, but I’ll let you know how it goes.


Until next time. Rhosyn.

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More Questions, No Answers

So my horrendously busy week is almost at an end. Just one more appointment tomorrow, and then I can (try to) relax and enjoy the bank holiday weekend.

Wednesday’s appointment with the dieticians wasn’t all that helpful. They didn’t tell me anything new, but they did make things ever-so slightly clearer (that’s me really clutching at straws to find some positivity).

My appointment was in the morning, so I was already feeling awful, but I had to wait for 50 minutes! By the time I got in there I was too tired to actually say anything. There was a whiteboard in the waiting area which showed you how long the wait was and then the reason why. I was so tempted to write “the Tory government” next to it, but I chickened out! haha.

Today I had an appointment with my GP, luckily in the afternoon. This one was ok, she’s ordered a load more blood tests, including an “autoimmune panel” to look at inflammation in my body, because I bought up the possibility of Lupus. I also got the forms for applying for a wheelchair and some medicine for my hay fever.

I’m going back in a couple of weeks for my blood tests. I’m trying not to get my hopes up that they’ll find something wrong that can actually be treated, I’ve been there so many times before. But as I said to my GP it’s been two years since I was diagnosed, 3 1/2 years since I became ill and in that time I’ve only got worse. She said that I might have something else as well as M.E.

I know that people rarely just have one chronic illness. I already have M.E. and POTS so why not welcome something else into the family…if it’s an illness that can be treated, then I will welcome it with open arms!

I’d love to hear people’s experiences with multiple chronic illnesses; did you find one masked the other? Which was the hardest to diagnose? Do your symptoms overlap?

Until next time. Rhosyn.

  Saw this on Instagram, I love it!

Nominated for The Versatile Blogger Award!

A couple of days ago I was nominated for The Versatile Blogger Award. Thank you to the lovely Heidi at Living to thrive chronic illness for nominating me, this is the first time anything like this has happened, so it feels great 🙂 I’m so glad to know that people are enjoying my blog.

versatile-blogger-award

Ok, so the rule are as follows:

1. Thank the person who gave you this award. That’s common courtesy.
2. Include a link to their blog. That’s also common courtesy — if you can figure out how to do it.
3. Next, select blogs/bloggers that you’ve recently discovered or follow regularly.
4. Nominate those bloggers for the Versatile Blogger Award — you might include a link back to the post on your site announcing their nomination.
5. Finally, tell the person who nominated you, seven facts about you.

I nominate:

Katie at Katie Cupcake – Life with M.E

PureSilverSands

Borderline Med

So here are seven facts about me:

1. I’m from the UK, and have only lived in one city my whole life. I want to move away when I’m better just to have the experience, but I’ll miss Bristol terrible, I love it so much here.

2. I live with my parents and have a younger sister who is away at university.

3. The only sport I follow religiously in tennis. I love it, can’t play at all obviously! haha, but I love to watch it. Going to watch Wimbledon is on my bucket list.

4. I listen to a lot of music, I went to lots of music festivals as kid, and it’s one of the things I miss most about being well.

5. I love science. I was studying biomedical science at university when I became ill, and I really really miss learning new things. I try to read non-fiction science books to keep my brain in training.

6. I’m passionate about equality, I have no time for anyone’s prejudices.

7. I love Harry Potter haha. I listen to the audiobooks to help me go to sleep, and when I’m feeling particularly ill. They’re so soothing! If they did a degree in Harry potter Trivia, I would get a first no doubt!

So there we are, it took me a surprisingly long time to think of those seven facts! haha.

In other news the days since my last post have been abominable, but I dragged myself to yoga this morning, and I’m really glad I did, it’s got me out of my rut. I’m feeling much more positive and energised, which is great! I’m going need all the positivity and energy I can muster for tomorrow, because I’ve got a hospital appointment really early in the morning, and I’m dreading it. I shall report back on how it goes.

Until next time. Rhosyn.

A Double Whammy

The last week has been pretty rubbish.

Physically I’ve been feeling very bad. Been feeling really lightheaded, shaky and sick every time I stand up, on top of everything else. It seems to be worse in the mornings. I can’t decide if it’s a flare up of POTS (postural orthostatic tachycardia syndrome), or just my M.E. being particularly bad. I’m not sure I know the difference to be honest, but it meant that I couldn’t go to yoga on Tuesday, which really annoyed me.

It’s also coincided with a dip in my emotional state as well. I’ve been feeling pretty depressed the past few days; very hopeless and unmotivated. I can’t decide if that’s because I’ve been feeling so much worse physically, or because I’m still stuck in the tiny spare room with no access to any of my stuff (because my bedrooms not finished being decorated), or a combination of the two.

Either way it’s a double whammy to feel awful both physically and mentally.

I was also supposed to have one of my rare trips out of the house yesterday to see actual people. After much umming and ahhing backwards and forwards, I decided that it wouldn’t be a good idea to go. When I feel more depressed I find it so hard to be around people. Some of my friends actually came over on Friday, it was really nice to see them! Although, I don’t think I was much company, I let them do most of the talking haha.

I’ve got an insanely busy week next week, I’ve got to do something on every day Tuesday to Saturday, which for me is way over doing it. I would rearrange some, but it’s mostly important hospital appointments that I’ve waited months for, and if I were to rearrange them I’d have to wait even longer.

On the plus side I’m moving back into my bedroom tomorrow, it looks so good! I’ve got to remember to take a photo before it gets all cluttered up with stuff again.

Until next time. Rhosyn.

quote

This quote has been getting me through the past few days.

Tip of the iceberg – M.E. awareness day

Well, here we are again. May 12th is M.E. awareness day, it sure seems to come around quickly.

M.E. is a much misunderstood illness, and one that carries a lot of stigma. Even healthcare professionals look down their noses at it, I can’t tell you how many times I’ve heard “oh that’s just when you’re really tired all the time right?” I’m sure other sufferers will agree that that is a sure fire way to make us see red. Yes severe fatigue is one of the main symptoms, but it is not the same as feeling tired! and there are so many other symptoms.

So I thought I would use this post to draw attention to some of the symptoms that are less well known, specifically the ones that affect me.

  • Post-exertional malaise (feeling worse after exercise) – I know this sort of falls under the “fatigue” umbrella, but I wanted to emphasise that when we (sufferers of M.E.) feel “tired”, it’s so much worse than an average person feeling tired, and it’s made a lot worse after any form of exercise. For me, just walking for 2-3 mins makes me feel sick, dizzy and breathless, I get a headache, and my limbs feel so heavy I can barely lift them.
  • Swollen glands – This comes in waves for me, and it’s very very rarely accompanied by a sore throat. I yet very painful lumps behind my ears, under my jaw and down my neck. Sometimes I can’t lie on my side in bed because they hurt so much.
  • Pain – I know thats a very general symptoms, but I have a lot of it. Muscle and joint pain, especially in my legs, feet and hands. Stomach pain, chest pain, back pain, neck pain, eye pain. You name it…it hurts!
  • Headaches/migraines – Luckily I don’t get migraines to often, maybe once every few months (although I have had a spate of them recently), and they are bought on by stress. Headaches however, I get a lot. Probably 2 or 3 times a week.
  • Sleep disturbances – I count myself very lucky that I have a relatively normal sleep pattern. I don’t have insomnia, or much trouble getting to sleep, but the sleep I do have is hugely unrefreshing. I wake up a lot during the night (5 or 6 times), but waking up in the morning is so difficult.
  • Problems with cognitive function – I don’t have too much “brain fog”, unless I’m really tired. But my concentration span has been significantly decreased, I struggle to find the right words for things, and can’t multitask at all. Seriously I can’t even text if someone is talking to me.
  • Depression/Anxiety – This has effected me very deeply. I’m being treated for both of them…somewhat effectively. The medications used to treat these conditions worsen my M.E. so it’s a balancing act.
  • Orthostatic intolerance (can’t stand up for very long) – I’ve also been diagnosed with POTS (postural orthostatic tachycardia syndrome) which means when I go from standing to sitting, or I’ve been standing for a while, my nervous system doesn’t adjust my blood pressure and heart rate accordingly, so I go dizzy and sometimes black out. This is completely separate from my M.E. but it’s something that makes it more complicated, as if it’s not complicated enough already!
  • Poor temperature control + poor circulation – My feet are always cold…always. I can go from hot to cold for absolutely no reason. I can’t stand extreme temperatures either.
  • Hypersensitivity to light and sound – I have to wear sunglasses whenever I go outside, even if it’s only slightly sunny. I used to feel self-concious about this, but I’ve got over it. Plus people can’t tell that I’m not wearing any make up! haha. I can’t have music or the TV on very loud, and if I’m in a loud place I get sensory overload.
  • Balance problems – I stumble over nothing, and overbalance if I lift even a glass of water.
  • Digestive problems – I’m on a very restrictive diet which has improved things, but that has problems in itself because now I can barely eat anything! haha.

Wow, thats a pretty exhaustive list! What I want to highlight is that when you see me I will look fine, pale and tired but ultimately ok, but that is the tip of the iceberg. I often think I’d like to look as ill as I feel just for a day, to give people a better idea of just how awful I feel. People who suffer from M.E. hide so much, and because of that people underestimate how much we are suffering.

The charity Action for M.E. has done a really great series of videos on the different symptoms of M.E. on their YouTube channel, you can check it out HERE if you’re interested.

I hope this has helped you learn just a bit more about the horrifically debilitating illness, M.E. More awareness is desperately needed, if you have an questions, please don’t hesitate to ask.

Until next time. Rhosyn.

A Big Thank You!

Well first of all I have to say massive thank you for the amazing response my last post got. It has been viewed thousands of times, I never imagined it would generate that sort of interest.  I want to thank everyone who sent me lovely messages and comments, it made me quite teary reading them all.

Of course in amongst the lovely comments there were a few very unkind ones, and that has caused me quite a lot of stress.  Stress and my illness don’t go well together, I’ve had 2 migraines in the three days since I published the last post! I knew of course that some people would disagree with what I said, but because I never thought the letter would garner this much attention I wasn’t prepared for it.

I’ve always had a slight complex about people not taking me and my illness “seriously”, not helped by the fact that depression and M.E. are amongst the most stigmatised illnesses around today.

I had already decided not to respond to any of them because the people who commented are the sort of people who I’m never going to bring round to my way of thinking. I did make the exception for a few though, just because I couldn’t stop myself, and I went with the “kill them with kindness” attitude. I think I’m going to post screenshots of my favourite ones (good and bad) to my blogs Facebook page so head on over there if you want to see them.

Yesterday morning I deleted all social media apps from my phone, and that significantly helped with the stress. I didn’t have a *ping* every time someone commented and the feeling of dread wondering if it was going to be something nice or nasty.  I think I’ll keep them off my phone for a while actually, it’s much less intrusive.

As a result of all this I’ve been feeling pretty terrible the last few days, I’ve barely been able to leave my bed. Hopefully things will calm down in the next few days.

It’s made me think about blogging in a whole new way. Obviously this blog is relatively new, but I’ve been writing about my experiences with ill health for nearly 3 years. This blog has already got more attention in it’s short life span than my other one did the whole time I was writing on it. I’ve always said that I write for me, to stop myself going insane with all the time I spend by myself, but recently it’s become more than that. I love that I’m connecting with people who are in similar situations. It makes me feel so much less alone, and if I help people in return thats a huge bonus. However I’m not sure how I would cope with having the same level of attention I’ve got over the past few days, all the time. I guess I’d have to grow thicker skin, and quickly. I’m pretty sure thats unlikely to happen though, so it’s all good.

It was my dad’s birthday yesterday, so we had cake and presents. This is possibly my favourite photo of the day! haha 🙂

Now I’m going to curl up in bed and finish reading this.

Until next time, Rhosyn.

An open letter…to all the people who voted Tory

I woke up this morning to the news that the Conservatives had an overall majority, and I’m not going to lie, I shed some tears. I had an idea that this might happen when I saw the exit polls last night, but as I went to sleep I clung on to the hope that maybe they were wrong.

I’ve been through a whole range of emotions already today. Disbelief, anger, sadness, frustration, but most of all I felt fear. Fear at what the next five years holds for not just me, but us as country.

I can sort understand why the very rich and privileged vote Tory, even if I don’t agree with it. Their support of low taxes and nom-dom status makes it a no brainer, but those people make up a fraction of the electorate. The rest is made up of normal people; nurses, farmers, taxi drivers, single parents, teachers, shop assistants… and I don’t understand how they can vote Tory. The Conservatives care only about those at the very top of society, they rule only to preserve their own interests and those of their friends.

If you voted Tory yesterday you chose a government who victimises those most most in need; the poor, the vulnerable, the disabled and the sick.  I fall into that last category. I have a chronic illness that has completely ruined my life. I’m housebound with no job, no social life, and very little prospect of either in the near future.

I rely on the NHS for vital tests, medication and treatment.  I rely on the welfare state to give me benefits so I can afford to get to these appointments, so I can buy dietary supplements to try and improve my health, and pay for counselling to prevent me from getting so depressed I want to hurt myself.

If you voted Tory yesterday you condemned millions of people to another 5 years of food banks, suffering, privatisation and pain.  If you chose to vote Tory yesterday you turned your back on compassion. How privileged you must be, not to need to rely on the NHS or the welfare state. I hope you enjoy your lovely life.  I truly hope no-one you love is ever put in a situation when they’ll need to rely on either of them, because I honestly don’t know how much longer they’ll be around. If you chose to vote Tory yesterday you condoned all the David Cameron has done, and will do in the next five years.

I watched a video today of Russell Brand reacting to the election result. He said “as a rich person” he should have voted Tory, but “as a human being” he couldn’t.

I’m not saying Labour are perfect by any means, but they are infinitely preferable to what we are now faced with, and it’s not just the NHS and the welfare state I fear for. The Tory’s want to bring back fox hunting, have an EU referendum, start fracking in the countryside, and have no plans to tackle climate change in any real way. All these things will effect not just the next 5 years, but the rest of our lives, our children’s live and our grandchildren’s lives!

I hope during the next five years, you find the compassion you lost yesterday.

Yours sincerely, a very sad, very sick, young women.