I am still here

A New Year

Firstly I would like to apologise for my absence on here. I have wanted to keep my blog up to date but many things have stopped me doing so.

The start of 2019 has not been a very good one for our family but I hope that we have had all the bad luck that this year has to give us and we have now got that out of the way! I have everything crossed anyway!

So, where am I at……

In the new year so many people were posting on social media about changing themselves for the better, working on being fitter, healthier, happier. Oh how I took all that for granted before. How jealous I now am of you healthy people!

I can’t remember how many times I have wished I could simply go for a walk. Walking was something I used to enjoy. Whether it was just into town or a more lengthy affair but now all that has had to stop. I can barely make it up and down the stairs some days or even from one room to another. My leg pain is unbearable and on the days when I do feel okay and I go out, boy do I pay for it! When I say go out I mean literally going to one shop. That is even too much really as by the time I get to the till I am in so much pain that I just cant wait to get home. I no longer do the weekly food shop because it is mentally and physically exhausting and so I have to rely on buying my food each week online and having it delivered. I don’t like this way of living but it is something that I have had to accept – just another thing that has had to change.

Often I have wondered whether to buy a walking stick because more often than not one leg will play up more than the other and you will find me having to stand on one leg like a flamingo to try and take the strain.

But if I am completely honest with you (and I always want to be) I can’t seem to get over the stigma attached to it. What will people think? Will people stare? Will I embarrass my children/husband? Alongside that is my stubborn head. If I “give in” to buying a walking stick then that just chalks off another thing in my mind that ME has taken away from me – the ability to walk unaided. Okay, I shouldn’t care what others think, I should do what is right for me but how easy is that when it comes to disability? We are already judged without a visual aid and my self confidence is so low that I am not sure if I am ready for this stage yet. I have also considered a wheelchair but again that’s even bigger than buying a walking stick. If I had a chair I could get out more but can I subject myself to scrutiny of others and all the feelings that I know this step would bring for me? But I am fed up of waiting..waiting for the pain to ease, waiting for the Government to step up and fund the vital biomedical research to try to find a cure for this disease. All I seem to do is spend my days waiting but is that how I will live out the rest of my days? Mainly housebound, isolated, with no structure to my life other than waiting?

Sadly I know I am not alone in this battle and ME has opened my eyes to what disabled people like myself deal with daily. That is not a word I ever thought I would call myself – disabled. It is what I now am though and I have to be okay with that – what other choice do I have?

Each new day comes but my days are long, repetitive, soul destroying. I only see my family and may only leave the house once a week if that but I am still here. I am still watching and waiting and hoping.

But please do not pity me.

I have to try my hardest to find the good things in life. I have to believe that better days will come and that research will be funded and a cure found. If I do not hold onto that hope, if I let go when I am hanging on with my fingernails then all will be lost. Those days do happen. When it all gets too much, when the pain is high and my emotions are all over the place I just feel like giving up because what is the point? What is the point of my existence? What am I able to offer anyone? I am lucky that on these days my husband always lifts me back up. He rallies me, he tells me that I need to rest, I need to listen to my body and then things will be brighter. He reminds me of what I have to offer and what I mean to him and my children. Even though I know this, I have to hear it to remind myself to keep going. The battle is hard but I will keep fighting because underneath all this pain and despair I do have a lot that is worth fighting for.

One thought on “I am still here

  1. Great to have you back, with yet a very honest account on how things really are
    I wish I had that pixie dust to give you some peace and get back to as normal as things are xx
    Love ya


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