Severe ME Day is held on the 8th of August. On this day severe sufferers of Myalgic Encephalomyelitis do all they can to raise awareness of the illness and share how it affects their lives.
If you haven’t read one of my blogs in the past welcome, I am Alisha and I have Severe Myalgic Encephalomyelitis. I was diagnosed in December 2012 which makes this my tenth year. Myalgic Encephalomyelitis has destroyed my life leaving me bedridden and reliant on my family to do almost everything for me.
This year I am desperately trying to be positive about ME and to raise awareness of the positive things it has brought into my life.
My life before ME
Before Severe ME my life was filled with family and friends. Very few of my weekends had nothing on our calendar, be it party days or days out for Becks or nights out with adult family members to celebrate birthdays, celebrating engagements, stag or hen nights or weekends, or sports events. If we had nothing, chances are we would have a few drinks after work on a Friday, leaving me with a hangover all weekend.
Myalgic Encephalomyelitis has changed me as a person and the outlook of my life. When I started to get ill I started having conversations with people online, getting to know people was really hard for me as it has been years since I have needed to, any other time I had alcohol in my system. I will never forget Sian, Ali, Jen and the most beautiful soul Alan who unfortunately was taken from our lives far too soon.
Positive ME
Meeting people who wanted the same as I did made a significant impact on my life and gave me the confidence to make the difference that I vowed to make the day I was diagnosed.
So today rather than focus on the illness I am going to focus on the amazing people I have in my life like Kate, Michelle, Emilie, Emily and Helen who help me every day by being in my life but on top of that they want to make a difference too. If I were to name every person I had got to know because of the illness I would be speaking all day (I’m not going mad I dictate these posts) just know that every single one of you makes a huge difference by making me want to be better. Sometimes I fall way off the mark but I will never stop trying. I have so many dreams to still achieve no matter how ill I am.
If you have a friend or family member with ME please read
If you have a friend or family member with ME or Severe ME I need you to get in touch with them, I appreciate that we all have lots going on in our personal lives. If your friend or family member has severe ME they could literally lay in one position all day every day, many days they will literally cry themselves to sleep due to exhaustion and pain. So I need you to try, please.
Each day your friend or family member with Myalgic Encephalomyelitis regardless of the severity will suffer with –
- Pain
- Aches throughout their body
- Muscle weakness
- Sleep problems – sleeping too much/not being able to sleep at all/disturbed sleep/unrefreshed sleep
- Brain fog
- Extreme tiredness
- Digestive problems
- Headaches
- Sore throat
- Sensitive to light, sound and or smells
- Allergies
- Post exerital malaise
- Twitching in muscles and or cramping
- Feeling cold and or hot that does not relate to the temperate outside or inside
This is a very small list compared to what your friend or family member may be feeling each day, I must stress that all of these symptoms are real. Please keep in mind that the person you had known may be a very different person to the person before ME or Severe ME so please keep that and the following points in mind.
- The most important thing is to listen to them
- Don’t draw conclusions and do as much research if you can as we find it difficult to explain due to something called brain fog.
- Your friend/family member is not crazy/disillusioned/ exaggerating or suffering from depression or bipolar, they experience pain daily and at different levels on top of their body aching all over.
- Offer them as much support as you can it may not be just one thing they are emotional about, on top of the pain it may be from a build-up of feelings and emotions.
- Don’t make assumptions about their life/ marriage
- Lots of people who have ME or illnesses like it are unable to have the relationship that they had before ME, no nights out, little date nights even going to the cinema can be too much for many of us. Popping in for a quick cuppa may be all they can manage, you would be surprised at how much of a difference that can make.
- One really personal thing is that they may not be having a physical relationship with their partner, this alone can put a big strain on a relationship as well as the sufferer’s confidence. Being in constant pain doesn’t rank very highly on the sexy scale which could also be putting a strain on their relationship and obviously, this isn’t a normal conversation topic.
I appreciate that thinking of someone you love suffering like this is very hard for you to accept, it may be too difficult for your loved one to talk on the phone so maybe just send a text in this first instance. From then on just let it happen organically, the most important thing is to listen and ask what you don’t understand.
You can find more information about ME at :
https://www.actionforme.org.uk
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
The future
For the longest time, I have been making plans about what I want to do to make a difference but this illness has been getting a lot worse leaving me unable to do much more than lay on my side in the foetal position all day long.
Over the past few weeks, I have had 2 incidents which have left a very visual reminder of this illness and what it is doing to me.
The most recent was just a few days ago, somehow I must have rolled out of bed waking to the corner of my bedside table in my eye. 
So now each time I look in the mirror I see a lovely black eye which is very painful around the brow bone.
My other was a fall coming up the stairs, I was just too tired to pick my foot up leaving me to fall all of my weight onto the left knee cap. 
Of course, I had a huge bruise on my knee cap but worse I was too tired and in too much pain leaving me to lay in the fallen heap for the next twenty minutes being kissed by my Alfie before I could pull/shuffle my way back to my bed.
This has all been a huge wake-up call for me as everything that I felt or very few things of what I felt since ME could be seen.
So from now on, I will be accepting offers of help and I will really start asking for help when I need it. I have always strived for perfection but unfortunately, that isn’t me anymore so rather than put everything off I am going to start doing what I want to do regardless of how I look and feel. I have put off so much and I am not doing it anymore, from now on you get the real me or at a push the best I can manage. So I ask all of you to come back again soon as all announcements will be posted here.
The start of me making a difference from today has been to tag each of my closest friends and family on the social media posts announcing this blog, as like each ME Sufferer I too don’t want to be left out on occasions or days/nights out. I have just let myself withdraw from everything as that was easier and it didn’t cause me the pain of seeing lives being lived that I could not be a part of. I truly hope that relationships can be rebuilt and that I can forgive myself for allowing it to happen. I don’t want my life to be that way anymore.
So to each of my friends and family member, I miss you all dearly and I don’t want to live my life like this anymore but to make that change I need your help, please help me.
To each and every one of you, thank you so much for reading this post. Today is a new dawn as life is far too short and from today I am going to start making the most of it.
Love always,
Alisha x x
PS if you are looking for an eye test and you have Severe ME have a read of this https://alishawhittam.com/specsavers-at-home/