ME.
If you are taking time out to read this Thankyou x
If you know me you already know that I have Severe ME .
I had a very normal life before I took ill . We had good friends, a fab social life . We both worked full time on top of looking after Our Beautiful Baby Girl . Our jobs were high pressure, I don’t think many jobs are stress free these days what with zero hour contracts and appraisals, self appraisals, monthly reviews and anything else that comes with your role !
Our day started at 6am and finished about 9pm . Days off were spent cleaning or ironing. We had family days out most weeks. Nothing extraordinary.
Looking back I suspect the first time I took ill was just before Our wedding in 2006 . Yes I was working full time and looking after my little family as well as hitting the gym pretty hard to get into shape for the big day . I developed a sore throats but it was not like anything I had before, it came with a head cold and ear ache that felt like someone had smacked me with a base ball bat . After a course of antibiotics it was getting worse , I couldn’t walk in a straight line , I was dizzy all the time and nothing was easing the pain . I ended up in A&E after collapsing and after looking me over the found I had Otis Media which is an infection in your inner ear . Otis Media we found that mine had spread to the base of my skull they put me on a course of antibiotics which led to a very subdued hen night because I couldn’t drink and didn’t feel upto going out much . It also meant that the Dr wouldn’t clear me to fly , so a little bit more stress than I needed. They gave me permission to fly the day before we were due to fly out . They advised me that it could be very painful and that my ear drum could perforate. None of this happened thankfully and we went on to have a beautiful wedding day .
Not long after I found out the answer to awful pains that I would get all the time . I kept a pain diary and discovered that the pain always got worse 14 days into my cycle . Now Drs had told me since I was 16 that this was IBS , fifteen years later and after a lot of tears I was confirmed as having Endometriosis. Due to the severity my consultant advised me the best course of treatment was a series of monthly injections which would put my body into a medical menopause. That was fun ! Each month I would have a needle into my tummy which wasn’t pleasant. Thankfully it worked and after a few procedures and regular medication which I would likely need to take for a very long time to manage the pain it is under control.
I was never right after that infection and I would get lots of pain in and around my ears. I would get Laryngitis a lot . My Husband & Daughter loved the extra quiet when my voice would go . At its height I was traveling from Kirkby to Liverpool Lime Street and then out to Warrington every day on train which was a lot of travelling. I would get home and be so tired I wouldn’t eat . I certainly had no energy for cooking so our diets were awful . On top of all the travel I was taking driving lessons again and thankfully in the September I passed my driving test . While driving made things a lot better in a lot of ways it increased my stress levels , I had to drop Becks off at her Nans then drop Hubby in St Helens and then carry on to Warrington do a full days work and then the travel in reverse .
The viral infections were getting more frequent and one day I got home so tired that I couldn’t make it up the stairs .
I was already taking a lot of pain medication to manage the pain from Endometriosis so each time I went to the Dr he told me it was a side effect of the medication and that it would settle down . Things went from bad to worse . My days off I couldn’t get out of bed , it felt like I had Flu but not just Flu it was like it was supercharged. Every single part of my body hurt , brushing my hair hurt , picking my head off my pillow made me dizzy and nauseous , even the nails on my fingers and toes hurt . This went on for months . I was tested for everything, Thyroid, Iron Deficiency, bone density , my blood was checked for every illness which could make you tired. Everything came back clear . Meanwhile the exhaustion was getting a lot worse . I would get home from work and couldn’t speak . The social life we loved so much was now impossible. Any time I was not in work I was in bed . This sounds a little big headed but I was good at my Job but even that was slipping. Any break in work I would sleep . As you can imagine it was causing huge anxieties at work and at home . I was worried what people were saying so I started spending my breaks in my car and just resting . Driving home from Warrington on the M57 I knew I was exhausted but I kept thinking it wasn’t far from home , I had the radio on , air conditioning to keep me cold and more alert but the inevitable happened and I veered the car slightly to the left hitting the rumble strip at the edge of the lane and opened my eyes just in time .
The next few months left me fighting for normality and failing badly . I would get signed off work and the first sign of better health I was getting my Dr to sign me back into work . I didn’t know anything back then about payback or post exertial malaise . So on top of work , home life and literally fighting against my own body I sat down with my Dr in tears . I had seen on Endometriosis message boards that people with Endo were noticing a connection between the two illnesses.
13th December 2012 I attended the Royal Liverpool Hospital for my appointment with Dr Nsutebu . After telling him everything he confirmed my diagnosis. He gave me pamphlets and the NICE booklet which told me all about the illness and what I can expect NICE . He said to me as I was leaving his room that he was sorry , I didn’t understand what that meant at the time .
After everything that I have been through to be diagnosed , the pain , the crippling exhaustion, losing friends & family from my life , losing my independence, grieving for my old life , bad Drs , pain clinics , ME clinics one thing I am absolutely passionate about and that is that I will do anything I can to try and raise awareness about this awful illness .
People don’t understand why I am so open about my life as it is now . I have to be absolutely truthful about how much that hurts me .
I don’t understand why people who say the love me or have been in my life as a close friend don’t support me doing this . Yet those same people will share news stories about a friend of a friends bike being stolen or a picture about a celebrity , weather updates ( I can see outside ) , views on politics or religion and the one that hurts the most a friend of a friend of a friends raising awareness or money for another cause .
I am not heartless , I understand I really do .
So I beg each and every friend and family member that I have to share this blog .
It is not about me , it is for every other person out there who is at the start of their ME Journey , it’s for ME Sufferers who can’t put posts on social media or they or embarrassed about speaking up because of how they have been treated in the past .
I want to make a difference.
I want to get people talking about ME and how it REALLY effects Sufferers.
So please please please share my story . Share the ME PJ Party Facebook page . Share my just giving page . Most importantly on Friday 12th May take a picture in your PJs and upload it to social media using #MEPJParty add #MESufferer or #MESupporter to tell people if you have ME or you support someone with ME . You could me a Carer or a friend , you could work with someone with ME or it could be a loved one . Lets get the whole world talking about ME .
Let 2017 be the year that we united and showed the world the real face of ME .
Thankyou x
A x
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