Monday 27 May 2013


So this post is probably going to be a bit rambly and pretty depressing. I just need to get everything out of my head and into writing, even if it's not very good writing.

My partner and I broke up a couple of weeks ago. I knew something was up and I kept having these dreams. Never thought they'd actually come true though. I won't go into all the details. There's really no point and I don't want to be bitching about my ex on this blog because it'll just make me look like the bad guy. He said that he wanted to be by himself and he wouldn't be looking for anyone new for a while. Well clearly a couple of weeks constitutes 'a while' for him. I thought he would have had the decency to tell me he'd met someone else so I didn't have to find out from everyone else. It made me feel so small. Less than nothing. Like everything I'd ever believed about our relationship was a complete lie. I mean how can you tell if someone really does love you?

All I ask from a partner is respect, love, understanding, caring, trust, affection, honesty and communication. I don't ask to be taken amazing places, be wined and dined constantly, bought incredibly expensive presents. I just want someone to treat me the way I'd treat them. And to understand that yes I am ill, yes it's not going away any time soon, some days I can do more than others but I will love with all my heart and will push myself to the absolute limits in order to work at a relationship. I sometimes think back and wonder how this would've panned out if I'd never been ill. It makes me hate myself more but I tried so so hard to just work through it. It's what made me worse. Do I deserve to be punished for trying too hard?

Ugh anyway, enough of my bitching. Just needed to get it all down.

What I wanted to talk about is how I've been feeling emotionally/mentally. I'm definitely not myself at the moment. Today is a particularly bad day feelings-wise. Let's try and list these horrible feelings:

  • Rock bottom- I feel like I've lost so much (health, relationship, ability to be a functioning tax-paying adult, independence, confidence, my cat- who was really helpful for my health and always cheered me up, now with ex partner), friends, ability to enjoy anything.
  • Resentful - I resent this illness. It's like I'm being stalked by my worst enemy. I wake up- it's there, it nags at me whilst I struggle out of bed in order to achieve 'something' in my day, it follows me throughout the day, reminding me of all the things I can't do anymore and mocking me when I hobble into the kitchen because I've been sat down for too long and my legs have seized up, it follows me to bed and nags me again as I try to wind down so I can sleep, then all the horrible thoughts start.
  • Guilty - I should be the healthy one in my family, not this poorly person in her twenties who can only do the bare minimum to help out her, also poorly, parents. I feel like such a burden. My stupid graduation photos are mocking me. Oh look at that, I got a 2:2. Well bloody done. What can I do now? Oh nothing because it's not a 2:1? Oh well. Waste of money that was. 
  • Worthless - I don't feel deserving of friends, deserving of love, anything. I really do feel like less than nothing. I often think about ending it all. How would I do it? When? What would happen if I wasn't successful? There. I said it. It's constantly on my mind, especially now. But what kind of person would that make me? Selfish, uncaring, stupid cow. I've been really pushing away my parents recently but they're really trying. They may not be saying the right things to me at the moment but I know they care. How could I break their heart? How could I do something so drastic when there are people out there going through much worse than me who haven't decided to end it all? See, my own conscience is stopping me. I don't feel comfortable in my own skin right now. 
  • Unloved - Well, you can read the break up paragraph to see why. Maybe my moods were too much? I don't know, his were just as bad and I coped with that. 
  • Weird- I didn't know how else to phrase this one. I suppose it goes with the feeling of not being comfortable in my own skin. I want to be around people but the conversations are too much for me. Every single emotion is far too intense. I feel jealous of anyone expressing their happiness because I want to feel that way. I want a reason to be happy. I try to count my chickens but it's a very short list. I'm trying to have more alone time but I'm sick of thinking about things and crying like some pathetic creature. Where's my strength gone? How do I get it back when I don't feel like there's any hope left?
I remember the doctor I saw who (pretty much) diagnosed Fibromyalgia. He had to give me a mental health questionnaire to make sure it wasn't depression that was the problem. I think I might've lied a bit with my answers. I put a very distinct 'no' on the suicidal bit when I should've probably said I have those thoughts at least on some days. I did this because of my experience with GPs and their way of treating things like depression and anxiety. It's still so stigmatized. I didn't want to be sent away with a bunch of strong antidepressants. I remembered how they felt last time. I felt like a zombie, everything slowed down, I couldn't control how I responded to things and it scared me. Also, I didn't want my GP thinking that all of these symptoms are down to depression because the physical symptoms are then ignored (or 'treated' with antidepressants). So yeah, I lied about my mental health. I thought I'd just be able to cope with it but it seems to be so bad at the moment. I literally don't care what happens to me right now. Well I'd be sad but how much sadder can you get? Is it finite? It's just awful isn't it. 

Ugh I'm really sorry, this is such a self pitying post. There's so much going on in my head right now, I'm not sleeping well, I'm not eating much. I will make myself something to eat, or will grab a bag of crisps. I will sit down and force myself to eat a bit, then I will look at this food and wonder what the point even is of eating it when I don't feel hungry. This is how I'm feeling all day. I downloaded a couple of relaxation apps in the early hours and they were such a waste of time. I'd listen to the guy with the soft relaxing voice telling me how my muscles should be feeling as I tense and relax them, how I'd feel heavier and drift off and I was just thinking "bullshit."

Ok, I'm really gonna go and try to distract myself with something now. 

Wednesday 15 May 2013

Hospital Appointment, 'The' Phonecall and the overbearing feeling of Dread.

Well today's been a real rollercoaster and I don't even feel like I've been fully 'there' for most of it. I've been sleeping so badly due to stress and the fact I have one less person I can turn to (I won't blab that all over my blog though, it's not fair)

I'm just so tired. Tired of feeling tired even. Physical, mental, emotional exhaustion. Dare I say it, I could quite happily sleep forever.

Ok enough of the rants (at least until the end of the post haha). I'll let you know about my hospital appointment today.

My dad and I got there in fairly good time and it didn't take as long as I thought it would. The parking wasn't bad either, compared to my local hospital! I was pretty nervous due to how damn cynical I was about the appointment. I mean, a General Medical Practitioner? What on Earth could they do/know that the GP didn't?

Ok so I got there, very helpful receptionist told us which waiting area to go to and I'd barely sat down 2 mins when the nurses called me in. Height, weight and blood pressure done first. My blood pressure is always pretty much perfect no matter how I feel. 123/80. Next I had to go for an ECG (is that standard for when you have hospital referrals?) and wait for the doc after that.

I only had a 5 or 10 min wait for the doc. Very surprised, from my experience accompanying mum to hospital, I was expecting at least an hour wait for anything! I was going over in my head what I wanted to say etc then the doc called me in.

He was really good! My old doc had sent my handwritten list of symptoms to this doc (even though he told me he always throws those things away...) so I didn't really have to explain a lot, apart from the new symptom (flashy lights in front of eyes), the symptom which hadn't been listened to (the dislocating knees) and explaining the mind fog/confusion more. He did the basic neurology etc tests (follow the finger, touch your nose, push against his hand etc) and wrote some notes.

He said that I should've been referred to Rheumatology because general medicine wasn't appropriate for my condition (so I still have the Fibromyalgia diagnosis) and also that he found 3 of my symptoms worrying and believes there could be some abnormalities in my brain so wants to refer me for an MRI (eep! It's what I asked for in the first place though so yeah). I'm guessing those symptoms are the blurry vision/flashy lights, confusion and something else? I told him I get headaches, but only mild to moderate ones (I only get migraines very occasionally) which come on with my other pains. Could that be the other 'worrying' symptom? Meh, I dunno.

Well after that I had to go to get bloods taken, looks like I'm being tested for all sorts of autoimmune thingies. It actually didn't take that long considering how far down the queue I was! I was very glad because, by then, all I could think of was how much I wanted a coffee and a sandwich.

Ok so once I'd got home I had a few hours to recover (it didn't make much difference) then the phone rang.

It was ATOS calling, the dreaded phonecall for the assessment. I guess not all of my day could go well huh? lol. So I have my assessment on the morning of 5th June. I was on the verge of a panic attack after that call. It wasn't the woman on the phone, she was fine, it was the fact that I've not heard one good thing about those assessments. It seems you could be on your deathbed (literally) and still be found fit for work. I guess I have to take it how it comes but i'm still terrified I will have a complete breakdown during. If I was found fit for work and I actually did feel 'fit for work' then it wouldn't bother me, that's fair enough. But the thing is, I'm not well! I feel like a zombie most of the time (although I'm seriously good at not looking like it, the wonders of makeup), the pain is just there, constantly, grinding me down, causing me to cry at the slightest things and chipping away at my own mental health (one of the few things keeping me from ending it all just to make the physical, mental and emotional pain end). I want to be independent, I really do, but I need to get better (or 'better enough') first.

I keep feeling really on edge, unable to concentrate, shaky, nervous and irritable. It's not even until next month and I feel like this already. I wish I could just take it one step at a time but I'm the kind of person who will think 10 steps ahead, consider all the worst possibilities and, when I can't think of the solution straight away, I just can not calm down.

Argh. Just give me something positive soon please. I'm trying to be a good person, I believe I'm a good person so can something go right for me? I don't want to reach rock bottom before things improve.

Sunday 12 May 2013

Fibromyalgia Awareness Day

Hi everyone,

I hope people with these conditions aren't having too painful a day today. Although I may not suffer from as much pain as some of you, I can definitely relate to how it feels to have the pain all day every day; whether at a constant or fluctuating severity.

I was trying to think about how I should sort of mark this day. Should I flood you all with posts shared on Facebook? Should I retweet the hell out of Twitter, erm, tweets? I've probably been doing enough of that already recently.  I even thought about getting all creative and writing a poem. Hmm, it's been a while since I've written anything that wasn't just a rant or a ramble so I'm a bit rusty I'm afraid!

Instead I thought I should just talk about what the day means to me, why I think it is important to be aware of this condition (for professionals and non professionals alike) and even try to explain how I personally feel. Ok! So here goes:


I'd not even heard of the condition Fibromyalgia up until just before I'd been diagnosed with it, and up until that time I'd been told that I 'probably' have M.E/CFS (although doctors never wanted to really diagnose it even after lots and lots of blood tests). I looked up Fibro and found these bits of information: *

  • (From NHS Choices) Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition which causes pain all over the body. Fibromyalgia has many symptoms, although the main symptom is pain. The symptoms tend to vary from person to person and it is unlikely they will ever disappear completely.
  • Symptoms as told by NHS Choices (Not copied word for word however): 

    • Widespread Pain- can be a combination of aching, burning sensations and sharp stabbing pains.
    • Extreme Sensitivity in the forms of hyperalgesia and/or allodynia (hyperalgesia = when you are extremely sensitive to pain, allodynia = feeling pain from sensations not necessarily seen as painful; such as a light touch)
    • Stiffness - Usually happens first time in the morning or when you've been in the same position for a while.
    • Fatigue - This can vary in severity and can come on quite suddenly
    • Poor Quality Sleep - Alongside problems with sleep you can get what's called 'non-restorative sleep', which is basically not sleeping deeply enough to get a refreshing night's sleep (even if you've technically slept for a sufficient amount of time).
    • Cognitive Problems - This is commonly known as 'fibro fog'. This is where you may get confused easily, forgetful and unable to concentrate. People often say they have trouble finding words or finishing sentences because the word/s just sort of  'go' suddenly. Very frustrating!
Ok, so there are a whole host of other symptoms but I don't just want to copy the whole of a medical page when you can just as easily find it yourself. I want to now talk about what this condition means to 'me'. It's all well and good reading up on the symptoms, theories on causes and 'effective' treatments but, unless you actually have the condition yourself, it's quite hard to gauge just what it's like to live with every single day. Words like pain, fatigue and poor sleep never really do it justice because, on paper, they just don't sound very severe do they?

Well let me tell you, dealing with all the crap is absolute hell.

I could quite easily fill one or two pages with all the symptoms I experience. I get blurry vision, shaking, weakness, anxiety, lack of confidence and this horrible feeling of worthlessness and guilt alongside many many others. 

The pain has got worse for me over the years. I didn't notice it as much as I noticed the dizziness and nausea for the first year or so. It was the exhaustion that indicated I should slow it down a bit and even then I worried that I wasn't trying hard enough. I'd always been such a well person who only ever got short bouts of hayfever or colds. I'm not even that sure if I've ever had the flu that bad if at all. I was in university at the time and couldn't even describe how I felt to the doctor (when I eventually decided I should go see him). 

It really really sucked having to miss lectures and quit cheerleading. Because I couldn't explain it properly (and didn't have a diagnosis) a lot of people didn't understand. Even my boyfriend at the time was telling me I would fail my degree if I kept missing lectures and that I'd have to try harder and stop skiving. I'm not even sure some of the people at cheerleading understood either. I guess it's hard to take someone seriously if they can only tell you a few symptoms which don't even sound that serious. I felt like I'd let the team down and come across as lazy. What I wish they'd known was that I absolutely wanted to push through all the ill feelings to do the stunts and the dances but even getting there was barely possible. I would be no use to them all exhausted and disorientated would I?

Well fast forward through that, I managed to get a 2:2 even though I'd not managed to make a single lecture in 3rd year and did all my exams feeling rough as hell. So yeah, I should be proud of that even if it does mean getting onto postgrad courses will be difficult. 

Ok so right now I'm in a lot of pain all over more days than not (of the aching, pinching, burning, sore, sharp stabbing types), on my good days I have mild to moderate pain throughout the day which can suddenly go worse if I move/turn/sit in a certain way. I feel exhausted all the time and suppose I'm actually used to it now. I feel quite weak most of the time and lose my grip on things easily. It's so strange, I can pick up a pen and somehow manage to fling it across the room because my hand wouldn't grab it properly. Being clumsy is so frustrating. Some days I can quite happily laugh at myself and others it pisses me off because it makes me feel useless. The blurry vision seems so have got worse quite quickly; which is extremely annoying when I'm trying to read something important, and extremely unnerving when I'm trying to navigate a shop. I will very rarely walk round a shop by myself now because it gets so bad. 

I'm not quite sure how I'd phrase it personally but, when trying to explain it, I've read things such as 'Imagine having the flu every single day' or 'Imagine having a migraine every single day'. I guess for me it would be like a combination of these things. I don't think you can really 'get' it unless you get it (literally!) but I appreciate people who actually attempt to understand it, even just a little bit. I can't speak for every single sufferer of Fibromyalgia, but you have no idea how much it means just to hear that someone has read up on the condition, or wants to ask you questions about it so they can understand more, or even just wants to know how you're feeling today. To know that someone spared a thought means a lot. 

The worst thing is silence. I've had people I thought I could really confide in, who'd listen to me like I've listened to them but unfortunately that hasn't been the case. They've asked me how I am and then gone silent when I've told them how I 'really' am. Sometimes just saying 'I'm ok thanks, you?' isn't enough when you really need a friend and don't want to pretend you're fine to be polite, or not cause a fuss. Especially when you're not able to see friends often if at all. 


So, why is it important to be aware of this condition? Well, to get educated about it (especially if someone you know suffers from it), to break the myths about it so barriers to diagnosis can be broken down (it isn't just an old woman's disease you know!) and (very importantly), to help with continuation of vital research into the possible causes, diagnostic criteria and treatments of it. I'm sure there's other reasons, so please comment or tweet me if there's others you want to tell me!

Lastly, I'm no expert, just someone trying to deal with Fibromyalgia and get on in life, but I hope everyone is having a good (or as ok as possible) M.E, CFS and Fibromyalgia Awareness Day. Gentle hugs from me :)

*N.B. Not sure about the legalities with copying and pasting so I'll probably have to cite/reference what I take from other websites tomorrow. Just want to be on the safe side!

Friday 3 May 2013


Hi there,

So, not much to report really! I've been filling in some of my ESA50 form. Definitely getting nervous about the next steps. I would absolutely love to work again fairly soon but I know I'm not ready and doing much more than the odd bit of housework (by this I mean washing up once a day and managing to shove some laundry in the washing machine before I'm in too much pain and have to rest again) would set me back a lot at the moment. If I'm found 'fit for work' then I'll have to appeal. I just hope I have a strong support network as I can see my mental health taking a massive hit. I know I'm being cynical but being optimistic never gets me very far.

I had a letter come from the benefits office to remind me to send in a renewed fit note/doctor's letter too as mine's nearly ran out. I'm not able to pick mine up until Tuesday though (which I'll send off same day) so I'm really hoping this doesn't go against me. I intend to follow instructions to the letter so that, if anything does go wrong, I know that I've done everything right on my part. Silly me forgot my doctor's name though. I really hope the same one writes my new fit note as I'm meant to put on the form which doctor writes them for me (At my practice you don't get a specific GP unless you ask to see a particular one).

Also, I have my hospital appointment in a couple of weeks. Really interested to see what he can do for me. If I haven't said before already, I've been referred to a General Medical Practitioner. Does anyone know what the difference is between that and a GP? Do they do more thorough tests for instance? I've been getting more headaches, blurry vision and a new symptom recently. The new symptom is flashing lights in front of my eyes. It gets to a point where I actually think I've seen something out of the corner of my eye and it'll make me turn to see what it is. It's not a hallucination though, nothing like that. Because of these symptoms, I think I'd like to actually have a scan. It does worry me a bit and I don't want it getting any worse. I already don't like to walk around a shop by myself when it's really bad.

I've been twittering a fair amount actually as well. I talk a fair amount to people with differing chronic illnesses such as M.E and Fibromyalgia. It's great to be able to talk to people and not worry about if I'm moaning too much, sounding like a broken record etc. Not that my friends make me feel this way, not the real ones anyway haha. Anyway, it's interesting to hear how people are doing, the lifestyle changes they've had to make, how the docs have treated them/perceived their illnesses, the meds they've been prescribed and other things they've learnt about their illnesses. Plus we can all support each other and know that someone's listening and 'gets' it.

With M.E, in particular, again and again I hear about people having their physical illness treated as a mental illness. Psychiatrists and Psychologists are used in their treatment alongside CBT, anti anxiety and/or anti depressants. When dealing with a chronic physical illness, especially when it's been years and years, there's bound to be some sort of negative effect on ones mental health. I don't believe treatments/therapies for mental illness should be so readily used to treat the physical illness alone and as a whole however. These treatments may be useful if mental health has been affected enough to warrant it but it needs to be stressed that M.E is NOT a mental illness, neither is it caused by mental illness so shouldn't be treated as such.

If you've been reading my blog from the start then you'll know the doctors previously thought I could have M.E (although they preferred to call it CFS grrrr). My experiences of medical treatment around that time are why I reacr so passionately to how it is treated. You'll notice I 'grrred' at the CFS label. It does annoy me that it is continually used. It plays down the illness so much and makes it sound like there's only one symptom, fatigue. How can this label lead to effective treatment?

In my opinion, calling M.E, 'Chronic Fatigue Syndrome' is like calling Cystic Fibrosis, 'Bad Cough Syndrome'. Sounds ludicrous doesn't it? Obviously with CF there are definitive tests (well, as far as NHS Choices tells me anyway) but you get what I mean.

Ok I'll stop before I rant too much :) Plus my arms feel like they're about to drop off and I'm trying to actually listen to my body and rest when I need to. Bye!