Cherishing Support - Wins and Losses.
This week, with circumstances that have unfolded more than ever shone a light on my support.
I am lucky. So very lucky to have an amazing support system. Yet I still mourn the ones who left my journey unable to cope or simply didn’t want the pain in their lives. They are fully allowed to think of themselves and I’d never hold anyone back. Ever from living their lives and enjoying their life.
What’s hard is that for my loved ones I’d do anything! Anything and although I am surrounded by amazing warriors I often feel alone. I push people away, I push them away to protect them so they don’t have to feel the pain I do. Miss out or feel sadness. Somehow I always hope they will fight against me and want to take on the challenge that is me.
With Mother’s Day last Sunday many fellow sufferers were low, they blamed themselves for being bad Mother’s, sisters, friends, daughters and so forth. Days that are special moments are often the toughest to live through. They reflect on the pain we have caused and the love we have lost.
Many see us a poorly. We want pity and need support. That’s draining on anyone, don’t worry we know that and live with the guilt every damn day.
I spend my life being told that if I wasn’t poorly things would be different. It makes me angry towards my health and myself. A sleep won’t make everything ok. A cry won’t wash the pain away. A supplement won’t heal you. This is the reality. This is life. A life many don’t want to fit into nor should they feel they have too.
The support group find great peace using the group as a safe place to express their worries and pain without judgements and know they aren’t alone in their struggles.
We often feel alone.
People walk in and walk out. Walk out when it gets tough and try to walk back when things seem calmer. We feel bad for being unable to live up to the people that these people want from us. Having to accept this isn’t possible and to let even the ones we hold so dear go. Them no longer being a part of our journey as we first hoped them to be.
In the end we cope with loss in many ways. Our disease and illness is very much a taker more than a giver. We can and should focus on the strength it does give us so we can deal with a lot of taking.
My support system are my life. I hope 🤞🏼 I don’t lose anymore on my journey. I apologise to the people who I have let down but always wish them well in their personal life journey.
Adapting and making peace is key in this game but is also so hard.
To finish. I wanted to raise the point about the genome programme that the NHS is currently carrying out to test a wide range of people with a number of illnesses in hope to find cures and better treatments. Yet I don’t qualify because of I have Lyme disease.
I am not eligible and my disease is not on the list that they want to do research in.
The hidden epidemic - the perfect opportunity for researchers to get a better insight into the disease and they won’t.
They call us crazy but they seem to be the ones who are going crazy! Not helping a silent killer. To me seems crazy.
As per usual the people we believe will help us, dismiss us.
What will be interesting is whether the surgery will display Lyme disease posters and ribbons 🎀 like they do for cancer in the month of May- Lyme disease awareness month.
The people we love, the people we lose. We have to appreciate their time with us and cherish every moment. Taking nothing for granted. We never know what’s around the corner.