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My name is Alisha, Welcome to my life here I share all about my life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. I suffer from Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome which has left me completely bedridden since 2012. I rely on my husband to care for me and I spend every day with my Black Labrador Alfie who makes a huge difference to my mental health.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some call this illness Chronic Fatigue Syndrome, some shorten it to ME or CFS, and some refer to it as ME/CFS.
When I was first diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) I went through a dark time. Having to come to terms with a life-altering illness hit me hard. I was left to grieve for my old life while learning how to accept the limitations of my new life.
It’s not just been hard for me it’s been extremely tough for my Husband and Daughter to experience daily life with Myalgic Encephalomyelitis
My Husband is always by my side, even on the nights when I am crying out in severe pain. On the nights when the pain is too severe for me to manage, he will call an ambulance and sit in a seat beside my bed. On many a time, this means getting home and having to go straight to work without any sleep.
Family Life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Our Daughter has been remarkable from the very start. She was only 5 or 6 when I first got sick. When the illness took over my body she was in senior school, and the less I was able to do she started doing or learning how to do.
Even through her university life, she sacrificed a lot and came home once or twice each month to help with my care as well as give some much-needed relief to my Husband
I know how lucky I am to have them as unfortunately, not all families with such a drastic shift can save what they had.
While friends and family tried to be supportive they had to go on living their own lives and while I miss them all dearly I understand. Unfortunately, that has left me with very few people in my life from the days before my diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The worse the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) got I started looking online for others with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I needed answers and unfortunately, the more people I talked to the more apparent it was that every single one of us no matter the location in the world had been let down by our public health systems.
We all had in common, feelings of loneliness, confusion and an absence of hope. Life with Myalgic Encephalomyelitis changed every aspect of our lives.
Advocate | Influencer | Creator
Our friends & families didn’t understand life with Myalgic Encephalomyelitis and how our illness was destroying our lives. They had their own lives and their problems. If you are reading this with no experience of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) you have to understand that many people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) live in dark silent rooms as even opening the curtains causes pain.
Life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is still extremely misunderstood and hearing advice from loved ones like “Just put on your makeup and you will feel better about yourself” or “Once you get out of bed and start moving about you will be ok.”, leaves Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) sufferers feeling like we are talking but no one is listening.
My body may be completely useless but my mind is still firing on all cylinders. When I was first diagnosed I made a promise to myself that if I had this god-awful illness I had to do something to make a difference that hasn’t changed and now more than ever I am fighting to make that happen
I want people to see us again, I want people to see that we are so much more than this illness allows us to be.
Life with Myalgic Encephalomyelitis
is incredibly lonely
Our friends and family may be eager to help, but they might not know how. We It could be helpful to suggest ways for other Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) sufferers to communicate their needs with their loved ones.
So please don’t give up on us just yet, here are just a few suggestions for things you could do if you have a friend or family member who has a Life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
- sit at our bedside to keep us company, maybe bring a book with you or some headphones if it is a bad day for us
- get in bed with us and watch a movie
- take us for a drive
- help us wash our hair
- bring us a home-cooked meal or make us one at our home
- catch us up on all the gossip
- take us food shopping
- join us for a sleepover
- paint our nails
- maybe even see a glance at the people we were before we had our illnesses or disabilities
- near Halloween or Christmas take us out to see all the houses decorated
Do you have any ideas or suggestions for something you wish someone would do to help you? It will be kept confidential. You can find my contact information on the contact page. Click below.
Most importantly, if you know someone with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), take the time to talk to them and express your willingness to support and be there for them. I’ve made the mistake of not accepting help because I didn’t want to inconvenience others, and now I feel incredibly lonely. Please learn from my experience and don’t hesitate to say yes if you need help.
You can visit The ME Association here – The ME Association
Action for ME here – Action for ME
ME Action here – ME Action
Life with Myalgic Encephalomyelitis or a Chronic Illness is hard. I share my life with no filter, with me what you see is what you get.