My name is Lorraine,
I’ve had ME/CFSand fibromyalgia for 14 years .
In 2006 I became very sick at the age of 37 . I was working in a lovely little Italian Deli as a cook had many friends and was bringing up my 2 kids on my own .
I had a busy mum life great social life and was always in the go .
I woke up one morning and was literally so sick I couldn’t get out of bed . After a couple of days I knew something was seriously wrong. I dragged myself out of bed and went to my GP the doctor suspected glandular fever so took tests .
I got call from doctor …think it was couple of days later to tell me my test was positive.
I was thinking…. ok let it run it’s course and I’ll be back to normal.
My normal never returned. After being off work for 3 months I had to go back to work . I had 2 kids to feed and missed my friend’s and work . It was so difficult. I remember finishing work at 1pm and going home opening the door and crawled up the stairs to bed .
There I stayed asleep till I heard my kids come in from school. I would drag myself up and go down make them dinner and try to rush through the school uniforms and clean up and desperately head back to bed .
I remember I was really grumpy and looking back this must have been hard on my kids .
Months went by and I was still really fatigued. Was back and forth to GP . They told me at 37 and taking glandular fever it would take me but longer to recover.
I moved home after a couple of years from a house to a flat . I still was very fatigued and worked part time and on days off I rested .
I kinda got into a pattern of pushing through desperate for my next days rest .
Eventually I had to change my GP because I was visiting so many times crazy worried that they were missing something. I felt like I was dying and nobody could see it .
I pushed in through still trying to live a normal life hiding the cracks that was tormenting me .
In 2011 I met someone I thought was my soul mate . I explained I was sick and had been undergoing tests at probably every department in the hospital. He wasn’t bothered by any of this and assured me he’d stick around and support me .
Life was good and I married the man I had fell in love with , and even though I felt awful most days and very fatigued I pushed through and the mask went on .
Finally after many tests and hospital appointments I was diagnosed with ME and fibromyalgia.
Finally I was so happy to know what was wrong with me .
I thought now I can get help, treatment, medication that will help .
Unfortunately none of that was to come . My husband was quite supportive at the start .
My friends and family didn’t really understand me .
People would offer up advice like … you need to get out more …. you need to take more vitamins. Fresh air . Exercise.
If only it was that easy .
I pushed and pushed my body way beyond my boundaries as I was so independent and hated asking for help .
I used to go to work , then go out to work with my husband when he was working. I thought the exercise would do me good and help the muscles in my legs .
My legs were so painful, I thought this had to help .
I pushed and pushed in through. In 2017 my husband and I split up and I asked for a divorce.
I was becoming sicker and I couldn’t take care of myself the way I used to . My appearance changed and my mood was low . I’m my ex husband’s words I became boring.
After he left it was like a relief. I could be sick without feeling guilty.
I wasn’t the girl he could have on his arm anymore that he could show off .
My life changed then . I became kinder to myself. I could be on my own in my own space and it was peaceful. I was content. My kids were older and although they didn’t fully understand what was going on with me they left me to deal with it the way I wanted to . I still wanted to be a mother and do things to help them as much as I possibly could.
I gave up work , stopped most contact with my friends and basically went into lockdown.
I would occasionally attend a family gathering, some I reluctantly had to say sorry I can’t make it . I’m now in 2020 I’m almost home bound, and a lot of days bed bound.
My new normal is being at home in my bedroom. I try going locally to my local store couple of times a week . I have to have someone to take me to hospital appointments and anywhere I have to travel. It’s been years since I’ve used public transport.
This is my life now and I have excepted it . I’m in pain every day . Exhausted every minute of every day . I can sleep 4 hours or 10 hours it makes no difference. I never feel refreshed after a sleep .
But one of the worst things about living with a invisible disability is …. the judgment of people who do not understand my struggles. Being doubted by loved ones . Rude comments from doctors.
Many times I’ve felt I cannot do this anymore.
But I carry on regardless. The DWP make you feel like a scrounger.
Today I’m happy as NICE have changed their guidelines on treatment for ME … GET has been removed. (Graded exercise therapy) people with ME were made to believe that we could exercise our way back to health.
I wish I was given the proper advice when I got sick and maybe I wouldn’t be as severe as I am now . I’m learning to pace . But fear I will need a wheelchair in the near future.
With all that’s going on the the world right now with covid …. I fear the people with long covid will go on to be diagnosed with ME . I pray for them they get the right advice. At least they won’t be given the advice of exercise your way back to health. So when people ask me how do I feel during lockdown…. I answer simply, this is my normal.
I’m also about to be a grandmother for the first time . This has brought me a great deal of happiness.
I just wish I had more energy for my granddaughter.
But I sure have lots and lots of love to give her .
Lorraine x
