I am really sick and tired of being sick and tired. I became seriously ill back in 2007 and fought it off and worked every single day that I could. I was determined to cope with things.
Then in February of 2009, I became even worse. One morning I woke up, and I simply could not move. Every time I tried, a searing pain would shoot the whole way around my body and that made it impossible for me to actually get my ass out of bed. My body was sick and tired of being forced through that shit every single frikkin’ damn day.
I shouted and shouted and eventually my eldest got up out of his bed and came through to see what the hell was wrong. When he saw the state I was in, he just ran forward and gave me a huge hug. I had to really bite my lip to keep from screaming on that one, because my eldest is severely autistic and if I had reacted in any negative way, it would have severely affected his mood and I will never deliberately do that to him. Ever.
Eventually, around ten minutes later, he went and got me what I needed – my own mobile phone so that I could call the boys school and tell them that they would be a little bit late as I was having some difficulties. Luckily the school understood and were really fine about things. Then I had to call my partner who was at work and wasn’t happy about having to come home. That was until he actually got home and saw me sweating and vomiting over the side of the bed into my rubbish bin because the pain I was experiencing was literally that bad.
He rang my doctor’s surgery and they advised him to call 999 to get me to hospital. I fought against this because the ambulance service are under enough stress. They don’t need to be dropping the blues and twos for my pain they really don’t. So I begged for a doctor to come see me at home instead. Foolish me thinking that he would see me and just tell me to rest a while and all would be well. Oh no no foolish woman! Guess again! After being poked and prodded around, he pulled my partner off to one side and started talking to him which really did piss me off! Ummmm, hello? It’s my legs that aren’t working, not my brain.
The doctor then announced that I did have to go to hospital and he was calling ahead to get me a bed and also arranging for ambulance transport (not paramedics) to come and take me in. My partner packed my bags and then took the boys to school so they wouldn’t have to see me leave in an ambulance. He was back before they even arrived. A fast ambulance ride later and I arrived on the medical emergency ward. A few hours later, I was taken onto one of the medical wards. My care was undertaken by a group of consultants. Medical, Orthopaedic and Rheumatolgy. I went through two long weeks of scans, X-rays and blood tests. This resulted in me being given one hell of a shock. I didn’t get just one diagnosis. I got several, and all of them were life changing.
I was told that I had both osteo and Rheumatoid Arthritis. Then Fibromyalgia and type 3 Ehlers-Danlos Syndrome which also led to me being diagnosed as having Dysautomia due to Postural Orthostatic Tachycardia Syndrome. After that came osteoporosis.
Just as an afterthought, I have restless leg syndrome, trigeminal neuralgia, carpal tunnel syndrome, asthma, a cardiac murmur and a small congenital hole in my heart. Couple that with Polycystic Ovarian Syndrome and IBS and you can imagine that since February of 2009 that my life has become hugely different and I had gone from being a totally independent woman who worked bloody hard and had been a registered nurse for most of my working life to being a totally dependant woman who needs help with pretty much every aspect of my personal life and care. This really gets to me. It makes me so sad and so freakin’ angry. I used to bake some pretty awesome cakes (I did a mean lemon drizzle) and I just can’t do that anymore. I can’t cook, clean, take care of the house or myself. I literally am dependant on my carer for everything. Yup, at 46 years old, I have a carer. 😭😭😭 I hate my life.
My day starts when I wake up, normally around 4am. I’ll have had around three hours of broken sleep and been tossing and turning like a fucking washing machine. I then clock (almost typed cock then) watch round to 6.30am when I can take my morning medication – hey, it’s only a handful of 15 pills. Shake me and I’ll rattle! Then I need to wait until around 8.30-9am for my carer to arrive. I’ll then get my hot water bottle made for my back. If the day is a very bad one, then there is a less than zero percent chance of me getting out of bed. I know if I do my pain levels will shoot through the roof and if I’m lucky, only one joint will dislocate. I have learned how to pop most of my joints back into place. I would be spending half of my life in the emergency room otherwise. The only joint I can’t do is my shoulder. So days like that see me with all of my braces on and resting in bed.
◦ On the rare days when I feel well enough to get out of bed, I will have help to get changed into a clean pair of PJs. I have hyperathaesia and my skin is so sensitive, most days I can only tolerate soft cotton PJs. On bad days, I have to go nekkid. If my bad days fall on a day where I have to leave the house for an appointment, I really suffer and have to strip the moment I get back home. I hate it.
On good days, I’m able to prop myself up in bed and either do some colouring or write letters. On a bad day, I just tend to cry and read on my Kindle.
I’ve learned to accept that my day is peppered with taking pills and having my time consumed by struggling to do even the most simple of things. I’ve had to learn not to be sick and tired. I’m just so very lucky that my friends and family are tolerant and I am so bloody lucky to have them in my life I really am. Without them I would be less than nothing.
Most of my days are now spent reading, writing letters as I’ve already said, and trying to think of interesting things that people who follow my blog might like to read. I try hard to balance what I write and I also try to fact check anything newsworthy as I don’t like spreading stories that aren’t true. It can do a lot of damage to people.
So why write this? I guess just to show how things can change in the blink of an eye and you should never be ungrateful for what you have. I see myself now as very lucky. People have asked me how I can say that given how my life has changed. It took me a while and a lot of adaptation before I could say it. I have two fabulous kids, a partner who worships me, a gorgeous if slightly potty cat and some of the best friends that I could ever wish for!
Be kind to each other!x