I have an incurable illness. I deal with it every day and it varies in severity from mild pain where it hurts to do anything for prolonged periods of time to incapacitating pain where I have to be helped upstairs to the toilet and I fall on the way back down because my leg or arm will just give way due to fiery, burning pain in my muscles. I can click every joint in my body at will and out of necessity for my spine, hips, shoulders, wrists and knees or else my body seizes up and I become immobile. There are secondary byproducts of the illness which include irritable bowel syndrome that causes involuntary bowel spasms, a long time on the toilet and a lot of pain, memory loss and a loss of concentration leading to bad recall to the point a handful of times where I've forgotten how to spell my surname, hair loss where after a bath I collect the hairs on the tiles and see how much I can accumulate in a month like some kind of terrible little game with myself and migraines where at night the pain will move from one eye to the other.
I was diagnosed with Fibromyalgia in 2009 after I'd given birth to my first daughter. The symptoms seemed to fit and I was glad to have a name to the illness, for it to be taken seriously and to be given medication to help me cope. Five years later and I'm now undergoing tests for what my doctors are 98% sure is Lupus. Lupus with Fibromyalgia, instead of Fibromyalgia - well, nobody is sure. I'm no longer interested in the name given to it unless it drastically changes the medication for the better and to aid in recovery because I feel like I'm treading water right now and I'm not sure if I'm going to sink or swim tomorrow.
You can find out more about Fibromyalgia here and Lupus here but the basic symptoms are: fatigue, muscle pain, sleep disturbance, joint pain, skin rashes, lowered immune system, IBS, headaches
I have two daughters, two dogs, a boyfriend and this. I haven't found a name to call it that fits just yet so it's mainly "it" or "the illness". When I haven't slept due to pain in a day and a half and become so exhausted I sleep solidly for fourteen hours only to wake up and be in even more pain it's a distinct issue as boyfriend has to take over everything from the care of both the girls (Amelia is not yet in nursery) to cleaning up around the house. I've had many jobs, none of which I can hold down because although I have everything in my head and I am more than qualified everything combined makes it nigh on impossible to make a daily commitment to work. Boyfriend finds it hard to keep down a job too as if I'm ill we have no outside help from family or friends all of whom work or are elderly the company won't hesitate to let him go over a few days leave even though they will be very sympathetic at first. We get very frustrated with each other about it, argue about money, become annoyed and stressed at living in such close quarters - me because he doesn't understand and him because I look fine so why aren't I fine? Five years on we are making it work because of love but it's so very difficult at times.
I started blogging because I needed something to keep me going. When I'm awake at 3am high on Tramadol and Codeine tablets prescribed by the GP it's good to have a focus, even if Netflix is on in the background. I love writing, reading, commenting, taking photos and the best part is that even if I'm ill I can do it from my bed or the sofa with the girls beside me reading, writing and watching Dora The Explorer for the sixth time in a row. We make our own family time by building blanket forts in the bed and on the sofa, finger painting, finding things in the garden be it a little treasure hunt or spotting insects. Two years on I'm making money from my online skills by writing content for small companies, managing social media accounts, presenting social media strategies and the occasional sponsored post or product review from the blog. I want to make this go somewhere because at this point, although I hope it will one day come true, I don't see me ever holding down a full time job with ease.
I don't go out much anymore. I may grab a coffee and a spot of light shopping with a friend or a few drinks once every few months in a club but it's very rare. I have become an utter homebody and that's almost depressing if it wasn't so damn cosy here. This condition has ruined my life and the anxiety of being out and having a flare up, falling over and not being able to get back up - it's terrifying. I have had many a panic attack on the train station platform while waiting to board to head to a blogger event but I try not to tell people too much because I don't want to be looked after. I am more than capable of doing it myself - well, on a good day.
It's not all bad. The blood rashes I get on my face, arms and legs often gives me the perfect opportunity to test out new high coverage foundations and long sleeved dresses. It has brought us all closer as a family because the children have grown up to realise that everything we do has been planned and is pushed because I cope because I have to. For them. To see a smile on their face while they're dancing in a playground or at an indoor soft play swinging from ropes; God, that's worth it. I have learned that I am the best blanket fort maker in all the land and that finger paint stains white bedsheets. My boyfriend makes the most beautiful caramel latte that knows just how to make me feel snug from the inside out and has the worst taste in films of any person I have ever met. It's taught me that to provide for my family I will do what it takes be it working at 3am or at 3pm from my phone and that if the dogs need to be walked we take it in turns but I do it because I love them. Sadie (the labrador) has learned to walk slowly on the bad days and I am forever grateful for that because I love being close to my dogs and spending time with them. They're my babies, my comfort at night and give me such joy through the times everyone else is sleeping for another full day.
I get down about it. All. The. Time. I vent, I cry, I'm frustrated and angry but nothing is ever going to stop it until there's a cure. I exercise daily (yoga mostly, spinning if I'm having a good few weeks and walking), I eat well to suit my nutritional needs and aid the IBS symptoms, I drink a lot of water (and a lot of coffee but that's besides the point) and I really try to take care of what I have because I'm lucky. A better day will come where I can run, take a walk, play, clean, work but when that day ends the only thing you have is to either push on or hope for another good day; it's mostly both.
Thanks so much for sharing this post, Ella. You make me feel less alone in this stupid illness and I just want you to know that if you ever need to talk, I'm here. You have been a tremendous support to me as I have been going through this, and I want to be a support to you, too. Now, if only they could find a cure for this damn thing so that we could get on with our lives! you have it much worse than me from the sounds of things, and yet you seem to cope so much better. I don't know how you do it, but you're an inspiration xx
ReplyDeleteYou are definitely not alone, my love and I'm here for you any time you need to vent. I think I have it worse because I try to do too much and with everything jam packed into the life it gets down a lot easier. I really hope your new medication is helping you.
DeleteElla - xo
You're fabulous - When ever I write about it I end up sounding like a robot spewing facts - You've reached the core of it and made it feel real which, sadly it is ( but in terms of the post is a good thing).
ReplyDeleteThis is why I stress so much over my blog, my blog that isn't getting sponsored posts and is getting a little PR, because I know that if I work hard enough it might allow me to earn some money without destroying myself in a job - Although you're not in a full time job any more, you're an absolute inspiration to me because you're doing what I want to do, and for the same reasons.
I get the panic attack stuff, too, first event today and dosed up on anxiety meds - Thankfully I'm getting a coach as they're rather chilled but, sadly, the upright seats will play havoc with my back...
I barely know you but respect and care about you so much because you do what you do and because your status' still make me giggle on facebook (or join in with a rant if that's the case) - I really hope that all the online stuff takes off for you because I know what it means to your family xxx
I've read your posts and I can honestly say they are so uplifting and remind me I'm not alone and you're actually the inspiration behind this post because yours helped so much!
DeleteElla - xo
I haven't been on your blog in a while Ella. I adore your writing style, it's lovely. This sounds like such a struggle, I have massive admiration for you. So nice to hear that blogging can be your outlet, and a way to make some money. I hope the doctors can provide some answers (and good medication) really soon xxx
ReplyDeleteThank you so much for saying you like my writing, it means so much. It is difficult but there is always a silver lining even if it's not in the GP's prescription pad so far!
DeleteElla - xo
I am a medical student and write a beauty blog myself. I don't often comment as I just don't have the time with my hectic timetable but I had to write a little something to say how brave you are to document your health struggles. From what I've learned about both fibromyalgia and lupus, I can see how crippling they can be and can make life and mundane little tasks that should be easy... well, not easy. And to have anxiety problems on top of that... well I can only say how sorry I am to read of your trouble. I really admire your honesty and I hope your doctors are doing everything in their power to help you out... in fact I am sure they will be trying their very best.
ReplyDeleteAmbi x
Bombay Rose www.bombayrose.co.uk
You're a medical student? That's so great! It's pretty debilitating but we all have our ailments and this is just mine. It's incredible that you get to view the illnesses from a different viewpoint of medicine and treatment.
DeleteElla - xo
You're very brave for sharing this and to my ignorance I had no idea. When I've seen you at events and chatted with you you seem so strong and confident and now I can put that down to your incredible will power. I find it incredible that despite everything that's going on you push yourself and find that inner strength to take care of your kids and your life. Some people would just lie down and complain but you still grab life by the balls. I take my hat off to you! Stay strong and focused and I hope that one day you will find that cure that you so deserve.
ReplyDeleteSending lots of strong and positive mental attitude your way!
Nina from little nomad
I try to remain positive because it's a life long illness and if I'm not I'll end up committing suicide as there are a lot of bad points. I have such great things in my life not least my family and blogging, getting to go to these incredible events and meet people like you so I try to appreciate them, attend as many as I can and make friends because we all need our spirits uplifted. You've been so incredibly lovely.
DeleteElla - xo
Oh, Ella...that's a lot to deal with and you're very brave to put pen to paper (so to speak) and tell us about it. I also have an incurable immune problem, which is thankfully pretty well managed at the moment, but sooner or later I will go blind. I don't have to deal with daily debilitation these days, but I remember then clearly and I'd hate to have it happen so regularly and to feel so helpless. I hope that if you do get a new diagnosis then they'll be able to offer new drugs and manage your symptoms better xx
ReplyDeleteThank you so much. I do hope there's new medication on the horizon but right now I'm thankful I do have some things that help in small ways and writing about it is one of them. I'm glad it's been so well received.
DeleteElla - xo
I complain about my problems and illnesses. But if I compare mine to yours, I'm nowhere closer. Mine feels like a drop in the ocean.
ReplyDeleteIt is difficult and hard off to you to even finding the energy to write this post. Because it's not easy. I wish you all the best Ella. I do believe that Miracles can happen as I have experience it myself. I will keep you in my thoughts and prayers. All the best and stay strong. If you ever need a Sanger to talk to, please do not hesitate. Take care and look after yourself. Loads of love and prayers
I definitely think that our illnesses feel awful to us. My illness is nowhere near that of some others but it affects me terribly and I have no doubt yours affect your life chronically too. I wish you all the best in your quest for health too Naaj!
DeleteElla - xo
Ella, I'm sorry it has taken me so long to comment on this. As I said before, I think it is so important to educate other people about conditions like this so very well done for doing your bit to minimise other people's ignorance. To find joy in the simpler and more important things in life seems to be a great way of tackling your situation. What a blessing that you have inspiring people around you and a talent for writing - two major silver linings :) Keep doing what you're doing, don't be too hard on yourself and know that you've got a huge support network whenever you need. Thanks for writing so honestly xxxxxx
ReplyDeleteI also know your story! I have Lupus, Fibro, Sjogrens and Scleroderma and understand your story completely!!! Keep on fighting hunni!!! x
ReplyDeletehttp://www.thewolfandme.com/