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.

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.

When the going gets tough... literally.

This is me on a good RA day. 

This is me today, right now - unkempt, wearing my husband's shirt, pale and sad looking. I'm perched at my desk with a massive blanket covering my cold legs. I'd get dressed but I'm in so much pain and my fingers are so swollen, I'd never manage it without help. And like most days, I'm home alone.

The idea behind this blog was to document how awesomely I kick this disease's ass, but the reality is, it's kicking mine! And it's kicking it hard! So today is the first day of a very real look at what it's like living with chronic illness. 

I feel like I've been hit by a truck. It's not even an exaggeration anymore. And this week my self destructing immune system joined forces with my digestion system and decided to make things a lot worse!

You'd think I'd been blessed enough with being slowly crippled by the RA but you'd be wrong. Apparently I need some constipation as well. RA pain meds like to make things worse elsewhere, you see. Only this caused another problem recently that many of us have heard of but probably never really understood the effects of how evil it is (unless you've suffered with it before).

Anal. Fissue.

It feels like I'm sitting on broken glass and trying to go to the toilet is almost a guaranteed fainting experience. I never knew something so small could be so completely awfully. My swollen joints pale in comparison to the pain that has been bestowed upon my bottom!

It would usually be ok because they give you some cream and that will help it. You just bath before you apply it twice a day. Easy! Easy if you can get the lid off in the first place. Easy if you can get in the bath unassisted. These hands can't do shit! I can't do it. I can't do anything. My independence has danced off into the sunset whilst my body is being ravaged by illness and my mind is being held captive. I can't stand it! 

And to make this pain party even better, mother nature decided today was a good day to start the heaviest period of one's life.

Needless to say, I am miserable.

I ask myself every night, when will I feel wellish again? At least well enough to get dressed. Or to make some lunch. But each day it just gets worse. I've lost my late twenties to this and it's not looking bright for the future right now. Dwelling in self pity is allowed today... I have my period, afterall. But I'm fighting to stay positive most days now. It's just exhausting. I miss my old body. It was much kinder to me before.

I'm sick of crying about how crappy it all is. I feel like I'm being ungrateful because in the grand scheme of things I'm still a lot better off than many, but you know, turmoil is all relative and I want my blog to be an honest account of my life with the Rheuamtoid Arthritis otherwise what's the point?

Mini Tour

I love to read blogs and see the blogger's pretty homes and where they sit at their desks etc. It's mostly curiosity *ahem* nosiness. 

Remember before, how I mentioned that I wasted my life (pre-RA) days wishing I was a Pinterest mum? Yeah, I'm still not there yet! But I do get some nice ideas from Pinterest and this Ikea shelf was one. I saw so many pictures of this shelf in people's home offices that when I saw it pop up on a local selling Facebook page for £30, I had to have it. Now the room is squishy but I love having a space for all my files and notebooks and baskets of random bits and bobs.

My desk area is where I spend majority of my time. I work from home doing web and small business branding design, so it's important that this area is light and airy and inspiring. I tend to ignore the fact I share this space with my dining room but I love it regardless.

I absolutely adore my bed. But hey, who doesn't love their own bed? During my worse flares, this is my haven. I don't spend as much time here now as I find I am eager to start my day but before, during my darker days of self pity, I'd just lay here until I knew the childminder would drop the children home from school. Those were some trying times for sure.

My bedroom is still a work in progress and I've since ditched the little tv for our old living room one as we recently had Sky connected upstairs (hello lazy weekends!) but I really love my bedroom. 

I had never owned a dressing table until recently and It's made it so much easier to get myself ready now that I have RA. Before, I'd just put my make up on standing in the bathroom or with a compact mirror on the sofa but now I can barely open a mascara tube so everything has to be set out just right and applying make-up with RA hands is a real task!

So this is my mini-tour. I'll be sharing in more depth soon.

Heels of Hell!

I don't know what I was thinking, but I bought these shoes. Why? Because I was feeling really empowered and bold and maybe a tad bit crazy so I stuck my fingers up to the painful, swollen toes that connect to my even more painful and swollen feet & said I'm having them anyway and ta-da! I present to you, the highest pair of boots I have ever seen in my life. 

In in the pre-RA era, I'd have never walked about in these bad boys. And honestly, after 5 minutes of wearing them I was in agony and I still won't ever walk about in them. But they sit under my clothes rack and they make me smile and that's what is important in life. Being able to smile! Who cares if you can't wear your gorgeous shoes, you can still look at them and appreciate them and know that they are yours regardless.

When life gives you lemons

Life did a 180 on me back in August 2014, when RA got it's nasty little hands on me. I was pretty much just floating through life, relying on my husband to be responsible whilst I dealt with my unending dilemma of trying to be a Pinterest mum. You know the sort! Crafty, washed hair, nice house and a pretty Instagram feed. Of course, I was kidding myself and everyone around me. The domestic goddess within' never really was and there was no time for anything else when I was busy doing nothing, avoiding people and wishing I was better. Wishing I was doing something with my time instead of slacking. And then I'd feel guilty for the slacking when my husband arrived home after a day of hard work. We were pretty miserable to be honest. He worked too much, I didn't know what to do with my time and money was forever an issue.

My income back then was in spits and spats depending on when I could be bothered to use my 'precious' time working or not. I was a photographer. But really, what I was doing was anything but something! So many wasted days spent watching movies in blankets, dreading 3pm because I knew it was time to go and face a playground full of reminders of what I wasn't really so good at. Being a great housewife slash mum. I was just mediocre. Mediocre housewife. Mediocre mum.

Maybe I was unorganised? Or maybe just plain lazy? Regardless, when the RA started to take away the use of my hands and my ability to walk any real distance, suddenly, I regretted all of my days of doing nothing. I'd wasted my twenties!

Many RA sufferers mourn their former selves. They miss the energetic lifestyles they led before this disease. And of course, I miss having the use of my body. There have been many pity parties along the way. But RA has given me something else along with the awful pain and disfigurement. It's given me perspective, discipline and courage. It's given me the ability to focus on the things I can do (which isn't a lot but what I can do is pretty awesome). It's helped me shape my identity and become not the Pinterest mum I wanted to be so badly, but the person I am deep down. A designer. A creative. Somebody who can happily spend hours at the computer designing beautiful branding and websites for awesome people and not only am I completely dedicated to my work, I'm also contributing. And contributing well. 

Now, somehow, I am finally living. Finding my place (at last) in this world, it's boosted my confidence, improved my relationship with my husband and even my kids. Now I can treat us to a family holiday, days out and treats. The depression is fading away and I feel good about myself. I might not be able to do 90% of the things I could do before, but the 10% I have left, I won't waste. I am humbled by my talent and ability to still feel I am achieving my dreams despite suffering such a horrendous disease.

SHITTY HANDS VS. LONG HAIR

In the days before my Rheumatoid Arthritis diagnosis, I was pretty pash about having super long hair. I ruined it up to no end with extensions and refused to cut it for YEARS! Imagine the split ends, right? It didn't matter though cause I knew with some TLC I had the sort of hair you're only ever jealous of! Bit of back-combing and a few waves put in with some GHDs and voila! Hair perfection. My hair was my thing! But RA has this special little party trick where even on good days you have complete weakness in your hands. That means brushing your hair with said hands is a total ball ache. So you stop brushing it and it gets all matted like a disgusting nest at the back of your head. You look like Hagrad from Harry Potter and trust me, it's not a good look. So, after weeks of gentle persuasion from my mother, I gave in and decided to have it cut off.

Now, you may think it's still long enough, but to a lover of the big kind of hair I may as well be a bauldie! It's short as shit at the back and longer at the front but you know what, whilst I thought at first that it was 1-0 to the RA, actually, I LOVE THE NEW STYLE!!!

With a new style comes a new me (ha! and + a new blog!) and I'm no longer of the 'I can't' attitude anymore. The days of misery and laying in PJs (feeling sorry for myself) are over. I say a big fuck you to the RA!