Frustrated & Still in the Dark

I'm still feeling awful. I went back to out-of-hours yesterday and again I was sent home. Apparently if I take codeine on it's own, instead of co-codamol (codeine and paracetamol combined), it will help. Erm... No, it won't. Something is seriously wrong. I am now losing weight at an accelerated pace and my stomach is red raw from all the heat packs I've been using for comfort. 

I feel like today is the day I would run away if I thought doing so would leave my bad health behind. I am so incredibly depressed. It's Father's Day today and I couldn't even make my hubby a cup of tea. I ruined my daughter's 11th birthday and then I ruined her sleepover. I wasn't well enough to prepare anything. Not even small party bags. I can barely get my breath. If I talk the pain starts to intensify and the breathless gets worse. I haven't had a bowel movement now in 7 days! My face is pale and my eyes are dark. I look like a zombie! 

I just can't handle this anymore. I have this impending sense of doom just hanging over me like the world might actually end any moment and this is from being so depressed because of how ill I am feeling.

Just how long can this go on for? The new flank pain reminds me of how it probably felt in the medieval times when they used to stretch people on those awful torture machines. It's such a bizarre feeling and I've given up trying to guess which organ is being effected. 

My poor family don't know what to do with themselves. They don't know what to do with me. None of us know what to do!

The good news is an appointment with my gastro doctor has been organised for the 30th. The bad news is it feels like a lifetime away when I'm feeling so unwell. Could it really be Chrons? Does Chrons work like this? Is the abdominal pain felt all over, including in the stomach/pancreas region too? Or is it Endometriosis that's everywhere? Wouldn't the chest X-ray I had the other day have shown something?

Then I start panicking that it's something much more worse and sinister! I'm 30 now. 30 year olds get cancer. There's so much anxiety on top of the my general bad health that I don't even know what part of my body to work on healing first! 

I really miss feeling normal... I wish we were spending Father's Day having a BBQ in the garden, the puppy playing in his pool and the kids bickering over the swings. But instead, I'm laying in the same place I've been for the last 2 weeks, heat pack clutched to my torso, hubby quietly sitting beside me asking if I'm ok every so often. Curtains are closed. The day has been cancelled! Heck, the whole month has been cancelled.

Severe Abdominal Pain - The end of me?

It's been over a year since I last posted here. I guess because I don't feel anybody is really reading and there's this anxiety with not wanting my disease to define my life. But it seems that my bad health is taking over and I find myself desperate to share my stories in hope of finding others that can relate.

I thought that being sick with Rheumatoid Disease was the absolute worse illness I could be faced with -- my body attacking the fluid in my joints leading to deformities, chronic fatigue, deficiencies, and with a lower expected life-span. But then I developed mysterious abdominal pain that has left me beaten, bed ridden and at some points, suicidal.

In the last two weeks I have been admitted to hospital more times than I can count, had an ambulance ride and seen my local GP several times. Their answers are all the same - Everything's fine.

I'm disgusted that the only tests I've had performed for my 11 out of 10 scale of abdominal pain have only included a couple of blood tests and one chest x-ray looking for escaped gas.

I presented originally with lower right abdomen pain which led the doctors at the hospital to think it was either appendicitis or an ovarian cyst. Yet I was sent home, told to continue taking pain killers and see my GP. The pain began to escalate and was soon being felt in my upper abdomen, lower abdomen, right shoulder & arm and in my pelvic area. Pain so bad that we have had to abandon my car half an hour away from home because I couldn't drive it home, miss my daughter's 11th birthday, miss my husband's 30th birthday and not be able to eat for coming up to 7 days. From my own research, there are a few conditions which seem to match my experience with this to a T; Endometriosis, Chron's and Pancreatitis. But nobody will take me seriously.

Being an RA sufferer, treating this incredibly painful condition on very low dose pain relief, I will say  I have quite a high tolerance when it comes to handling any sort of pain. I gave birth twice with nothing but paracetamol to get me through. This abdominal pain, however, has been the most incredible, unbearable pain I could ever have imagined. And it's not going away. I've had no bowel movement for a week, my stomach has all sunken in and then yesterday I started the most painful period of my life, losing an unexpected amount of blood which has left me faint and with blurry vision.

It feels at this point like it will go on forever. How can the doctors not feel a CT scan at this point should be carried out? I have refused their pain relief offerings out of fear that they will think I'm drug seeking and I have cried endlessly. Tummy examinations have proved excruciating in certain areas of my torso but nothing has alarmed any of the doctors I've seen. Could so many medical professionals have all gotten this wrong? Or is it in my head, like I'm being led to believe? I don't have time to be sick. I have a business to run with a queue of unhappy clients wondering why I've not returned their emails. I have children with important things going on like birthdays, and sports and out of school clubs. I have a house move coming up in less than 2 months and I have my own dignity and peace to keep in tact. This is not the time to be sick with a mystery ailment that has completely floored me. My husband has missed nearly a week of work and faces losing his job. He's stayed by my side, helping to keep me comfortable. But what really needs doing at this point is a thorough investigation and this can't wait several months because I fear another week of this will be the end of me. You cannot go without food this long and survive! And the pain feels like it will drive me to do something stupid.

Living with Rheumatoid Disease is a walk in the park compared to the horror I'm facing with my stomach right now and I can't believe nothing is being done.

So as of right now, I am truly conquered by my ever-failing body. I give up! I'm waving the white flag! I hope that by the time I make my next post, I will have found an answer and this nightmare will all be over.

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.