Over this Quarantine, lots of us have been feeling forgotten but what when this is your life. I was officially diagnosed with ME in December 2012 but a long time before that I felt that I had to withdraw from my life.
See it’s not much fun to be around others when they are drunk, I found that I couldn’t drink alcohol at all, as any time I had a drink I would wake the next morning to vomiting black stuff up, no good night was worth that. When you go from the person I was to the person I am now I’m not surprised that people stopped calling or responding to texts.
My life did a 360-degree turn, I went from loving company and throwing parties to a hermit. I avoid phone calls and instead email or text and I do not leave the house. I couldn’t go out due to the exhaustion and I was now everything I never wanted to be. After the medical menopause, the weight piled on. I didn’t feel me anymore.
So why I am writing this, I want everyone who reads this to just think of the other side for a moment. This past weekend was really hard as we had a party with friends as well as a separate party with my family. I couldn’t do to either and I was so ill my Husband had to stay home to care for me. It hurt a lot getting notifications of someone posting a photo and seeing that group of people who you would have been stood along. I know I felt like I was missing from the photo but no one else seems to care.
Being bedridden can make you feel invisible and you absolutely feel like you don’t matter, it’s like the world went on without you. When I first got ill I would get messages or calls to ask how appointments went or if I needed a lift to such a place but all of that was a decade ago now. My thirties were spent in bed so of course people moved on but that doesn’t stop it hurting and I’m not calling anyone out or laying blame on anyone, I get it.
I always said that I would use this blog to post how I feel and I know I’m not alone in feeling this way. Every single day I speak to sufferers who only have a handful of people from before ME in their lives and it is normally a parent, partner, child and a very close friend. Now, all we have is each other and recently I have been such a bad friend to them due to how ill I have been. For that, I am deeply sorry.
To understand ME you have to not think you know what it is and really listen to someone who has the illness, don’t think that you understand because you saw an article in the newspaper. Listen to your friend or loved one who has this awful illness, to do that you need to find the best way to communicate with them.
Most ME sufferers find it very difficult to talk on the phone as we feel very self-conscious, with a lot of us we have problems remembering what things are called. Feeling panicked or that you aren’t being understood as well as the actual call itself leaves us exhausted. Yes, you heard that correctly we get exhausted from a phone call. I ask everyone that I need to communicate with to email or text me. This allows me to return the message when I am able to as well as giving me the time to think about words or use voice dictation, spell checker etc.
I have to take a moment here and ask that if you have a friend or family member who has withdrawn from what was their normal life, to just take a moment and reach out. We all feel lonely on top of how ill we are and something as simple as a “Hi how are you” can make a huge difference to them.
I wouldn’t be true to myself if I didn’t also mention just how difficult grief. However, if you add that to an illness like ME you are left drained. The emotion of any type can exhaust someone with ME, so a simple argument, stress, panic attack, even good news, they will all leave you drained. Unfortunately the past month we have had two deaths, My Dad lost his Uncle and we also lost My Mums best friend.
When I got the call from my Dad to say My Great Uncle was ill I felt like someone had pointed something to my head and zapped everything from my body. I haven’t seen him for years but I always remember how he held a conversation, I could listen to him for hours. I’m sure that is why I love a cockney accent. My Dad adored him and his wife. We are so very fortunate that we have Facebook as My Dad is now in contact with his Uncles daughter. Sometimes in life, you have to be thankful for the little wins and I know that My Dad will be there for them in every way he can.
I was still shell shocked about Dads Uncle when Dad called to tell me that my Mums best friend had been in an accident and was killed. I felt like I had every memory of my childhood going through my head as he was speaking, every time she was sat in ours or we were sat in hers. Being in her front garden not long after she had her daughter and how much she adored her and her sons. The little rhymes she would make up on the spot to make her baby laugh or telling her lads it was time for tea. I haven’t lived at home for over twenty years now so I left my old life behind, but you will never forget the memories both good and bad.
Death isn’t fair and losing a parent at any age changes your life, people will live on forever in the memories you have but you never want that you only want them.
I think about my death a lot but I don’t want ME to be my story. I want my old life back in so many ways. I want my friends and family back, I want to feel like I still matter because I am still me, I may be different in so many ways but I am still me.
When I was diagnosed with ME I made myself a pledge, that was “If I have this illness I have it for a reason and I will do everything I can so others don’t feel the way I do”. I haven’t been doing that recently but I promise you all I haven’t forgotten what I wanted to do and no matter what it takes I will do everything that I can to make a difference.
Thank you for taking the time to read this and if you are feeling lost or alone I am always here, Love always Alisha 😘