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5.25.2015

Facebook Woes & Insomnia



Is everybody on Facebook really as happy as they appear? Are they content with how their lives turned out and do they have plans for the future that warms their hearts and make them feel like they are heading somewhere?

I scroll through my feed with absolute envy, reading my Facebook friend's posts about their family days out, new homes, new cars, perfect holidays. I am happy for them, really. But I look at my own feed and it's so dull and boring and empty. It's that way because I don't have anything to post about. No weddings to attend and no parties. No celebrations at all. No days out with friends (what friends?) to look forward to or even posts where there's good news for my health. What could I have posted today? 'Great news, the Prednisolone is working!', but really, the Prednisolone is working too well and now I'm bleeding from my arse because these magic pills are causing my stomach ulcer to bleed. And my middle finger is even more severely bent! And I had a totally childish break down today in front of the hubby where I screamed repeatedly "You should hate me! I hate me!'.

I took a few moments after to think about how my Facebook feed envy turned into full blown rage and then I realised I was distraught that the only thing I had planned during the children's week off school was my oldest daughter's brain MRI scan (in the morning) and the truth is, we're not going. We can't go because I'm disabled and cannot open my door, let alone lock it. We tried to teach Madi but it's too stiff for her. I called around for a chaperone but everyone is busy and hubby couldn't get the day off work and so my only day for the entire week to take the kids outside has been scuppered. Worse of all my daughter will now have to wait another month for her MRI - #mumfail

It's these little things that make life so exhausting. It's bad when you can't wipe your own arse but at the time it's okay because the pain is so horrific that the acceptance of being crippled seems justified. But on the better days when you still can't do basics like opening your front door, you just want to punch yourself in the gut repeatedly and drown in tears of self pity.

I'm like an emotional yo-yo. One minute I'm a fighter, ready to turn any 'can't's into 'can's and then the next, I'm crumbling inside, desperate for it to end. Everybody on Facebook is okay though. I'm pretty sure I'm the only person in my age group who didn't attend the Radio 1 roadshow that played locally the other day. I couldn't even make it to a Django Django gig hubby booked for me a while ago. It was too cold. That's right. It was too cold for my stupid body to cope. And we don't drive. So we'd need to get the bus and the bus would take 2 hours and Ash wouldn't finish work in time so I'd have to meet him at the bus station and well, who's gonna push my wheelchair there? So we missed the gig. And honestly, at the time, I was glad because it meant I could stay home where I was safe and warm and able to manage my pain. It would have been a great Facebook post if we'd have gone, I'm sure. Oh, what a life.

See, people think arthritis is just a bit of pain in the joints. I'd be bold enough to say it's actually worse than cancer. Cancer horrifies people. As soon as the word is mentioned people automatically feel sad and understand the severity of the illness. But Rheumatoid Arthritis sounds okay. It sounds like no big deal. People don't realise that the drug that cancer patients take for a few months is actually the same drug you treat RA with, only for RA it's mostly treatment for LIFE! They don't realise that you suffer with the agonising pain of your bones deforming until you're crippled. It's a lot like cancer really. It invades your system, only there's no cure at all. I feel like I already died to be honest. Morbid maybe, but this blog is my way of being completely honest with my feelings. I won't force a fake inspiring post when the reality is, I'm terrified. I'm mourning the life I had before August last year, before the RA came out of nowhere. When I was unwell for many years unknowingly, yet fit as a fiddle compared to the state I am in now. A time when I could go out whenever I wanted and make myself a sandwich. I have this ridiculous kettle tipping gadget now so I can pour my tea but sometimes I can't even get the lid off the tea bag canister and even with my wonderful, life changing kettle tipper, I usually still can't get myself a tea. I forget how it feels now to be normal. I forget that once I could get in and out of a bath without somebody to lift me. Dignity long gone, that's for sure.

It's 3am and Ash is snoring beside me. Steroid insomnia is okay I guess. But I'm sitting here alone, knowing that tomorrow I will be alone too. I would say I'm very much lonely really. Where did all my friends go? Nobody visits now. Maybe I'm too depressive? Ash works all week and it's the worse feeling knowing he's going to go and I'll be here to fend for myself when I'm unable to. But we need his wage, even though my design business does well. I wonder what all my Facebook friends will be doing tomorrow and it saddens me that I'll spend another day, enviously trawling through my Facebook feed.

5.01.2015

Making Progress


Yesterday was the start of a new chapter in my life. I've battled with a phobia (called Emetophobia) for many years and if you're a RA sufferer yourself, you understand that many of the treatments have huge risks of being sick. Because of my phobia I have been completely unable to treat this disease. I've been unable to ease the pain because majority of the pain killers list vomiting as a common side effect. I've been completely paralysed by this phobia to the point of allowing myself to be crippled by this aggressive illness. But enough is enough! Earlier last week I called an extremely inspirational man who specialises in treating emetophobia Called Rob kelly, author of the Thrive Programme. We made an appointment and I eagerly waited for my chance to start curing this phobia.

Mum came with me and we took the train to Cambridge for my first 2 hour session. It was such an amazing appointment. I have already learned so much! I feel for the first time in years that I can cure this phobia once and for all. And I will! I won't go into detail now but it really has already made such a big difference.

It was our first time heading so far out with the wheelchair and I have to say, the train was a nightmare! So completely packed out that mum had to fold my wheelchair up and I had to stand for most of the journey home. It really opened my eyes. I can't go on, living my life in this state. Today I am suffering physically but feeling somewhat amazing emotionally.

It's early days but it's all about the progress at this state.