An announcement I have to make

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There are so many ways of looking at life, and the shitty things that happen to us, that sometimes it feels as though we’re living in a human washing machine. When we are kids, it was oh so simple. The clouds were made of candy floss, the moon made out of cheese, and that was alright because we were kids. No one tried to tell us that we were wrong, as that the truth sounds far more mundane, but is actually far more exciting. The only people who constantly burst our bubbles were our siblings, and they so loved doing it. Being an adult means that we understand the science behind clouds and that if there is cheese on the moon, well it was left there by the astronauts. No matter how much we understand, or we learn, life just get’s more and more complicated, more and more confusing every single day. The more I think about it, the more I look back on my life, I don’t think I actually grew up, until the day a doctor told me I was ill. Suddenly, I didn’t care about any of that, I didn’t care that my final bubble had been burst, all I care about was living.

I always thought that whenever you got news like that, that it would be death that you would find yourself thinking about, but all I could find was a desire to live whatever time I had left, just as I had to that point. I put on the biggest set of blinkers that I could find, and all I could do was carry on living as though nothing was wrong. Others admired me, they thought that I was incredibly strong, I know because some made a point of telling me so, but they didn’t see the truth. If I’m totally honest, I didn’t touch those blinkers, until the day my left arm stopped working. For five years, I got on with life as though nothing had changed. I took my meds, I went to work, I had chemo, I decorated our home, I bought furniture and ornaments, filling my home with all the things I thought a home needed. When the time came, I learned to use my wheelchair and sped everywhere at full speed, but still I hid from the truth. My weight dropped to the point that I was hospitalised to have a gastric nasal tube fitted, and still I was telling myself, there was nothing wrong with me. I had flares, I spent time in hospital, I took drugs, tons and tons of pills with names I couldn’t pronounce, but in my head, I was still fine, until that arm stopped working. How do you go through all of that, and not understand the reality of what is happening to you?

In fact, I don’t think I took it in fully even at that point. Being housebound didn’t stop me from working, it didn’t stop me from living as I had done, every day up until then. I got up early, I did my work, answered all those oh so annoying emails from people I knew already had the answers, but they just wanted to hear them, from me. Life continued, unchanged in content, just changed in location. I still had those blinkers, they didn’t fall off until a year after I lost my job, and then, for the first time in 9 years, I actually stopped. It took being turned down by hundreds of agencies and ignored by the HR department of any company I thought might need my skills, thousands of emails later, I accepted that no one wanted to employ me because I was ill. Me, the person who has lived through everything and refused to stop living, was ill and I for the first time, had to face that fact. Why did it take me so long? Because through all of it, I rarely felt ill. I was in pain, I was fatigued, occasionally, at times I even thought I was dying, but every time I got better, I was no longer ill.

It’s taken me several days to write this post, because of one thing, this post is a declaration. I’m no longer just too ill to work, I’m too ill to do almost anything, even the regime I have pushed myself over the last few years to maintain. I’ve pushed myself to the limit, day in day out, I have exhausted myself time and time again, but I have kept pushing. That combination of blinkers and determination have taken me through 15 years, of living with a condition that is doing it’s best to kill me, but it isn’t working any longer. In the last 4 years, I have slowly stepped down what I do every day, and every step down has hurt. This one really hurts. Right now, I don’t have the energy to keep doing all that I do, neither do I have the mental capacity to do it either. In the last two months, I have become iller and iller and I can’t escape that fact. I’ve slowly laid out the pieces over the last few weeks, but today I’m laying it out in black and white. I’m ill, I so ill, I’m stepping it down again. No, I’m not going to stop blogging, but I am going to stop blogging every second day. I’m not even going to say when or how often I am going to write, but be sure, I will still be writing, just not as much and not so often. I don’t have the strength left to fight in this way anymore, and I need my strength to fight in the ways that will get me through the next few years. I want the strength to see the candy floss for just that little longer.

 

Please read my blog from 2 years ago today – 13/10/2014 – It’s time for an adventure

It’s one of those odd weekends that we haven’t had for what seems a really long time. Once more the admin department at the hospital Adam works in is behind on the job of scanning doctors notes to add to patients files. I really don’t get this as the NHS has spent a fortune putting all patient records onto a computer, therefore the doctors no longer need paper files when they……

56 thoughts on “An announcement I have to make”

  4. You take a step back now, take care and only do what you want to do with everything in life. Lots of caring people have shared your journey and your courage throughout. You can always reblog some of your posts if you feel you have to but do keep in touch when you feel fit enough. xx

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  6. Yes the candy floss clouds need revisiting.
    That is an excellent positive way of thinking. Can I join you? G
    Grateful for your helpful posts.
    With love n stuff x x x
    (((Hugs)))

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  7. sending you all good wishes and will look forward to reading your blogs when you feel like blogging. Take good care i have had MS 24 yrs and can understand just how you feel .xxx

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  11. I admire the strength you are showing to live life on YOUR terms – I have loved reading your blog and will continue to look forward to anything you wish to share. Thank you for everything you’ve given to all of us. Please take care of you and know that many “out here” love you!

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  13. This post just sums up everything you have gone through over the years. Having read everything you have written over the years and knowing how positive you have been to read this makes me feel devastated that another person is suffering from this dreadful disease. It is hard for you, I know, I have seen a friend go through this and struggle on a daily basis until eventually she had to admit that she couldn’t fight anymore. i know you will keep trying hun and you have to do what is best for you under the circumstances. Sending lots of hugs xx

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  14. Hey, that just means we’ll appreciate your nuggets of wisdom more when we do get them!
    I know I don’t have to be here reading and following along, but I want to. You’re teaching a lot of people a lot of things (obviously me included), and I know I’m better for it 🙂
    Thank you for continuing to teach me about this perspective and about yourself – I know I can be patient while your body decides when it’ll cooperate with your will.
    Lots of good thoughts and hugs from over here!

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  15. Your announcement has given me and many others, courage and a bigger Perspective on life, love, what’s important and All beautiful things. You have always inspired me. Please know I’m here for you, with my love and prayers. You are a beautiful, courageous woman.

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    • When you become too ill, all the research in the world wouldn’t help. Research is about the cause and then how to stop the disease in it’s early stages. It never helps those like me, my illness is rare and advanced, but I knew all this from the start. All any doctor can do is try to control the symptoms and those they can’t, try to mask them.

      I am content with my life, because I am alive and I have the intention of living much longer. ☺

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  17. Hello Pam,I’ve read your post with a heavy heart.All of us will be here to read your posts when you feel able to write.Do what you have to do,when you want to and not before.Put your self first for a change and just be.Sending every good wish with love.Nx

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  18. Thank you for sharing your journey. It’s people like you that give others the strength and courage to get through their own challenges…big or small. I don’t know you, but wish you all the best, and I look forward to exploring your blog.

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  22. Sorry to hear this Pam, but totally understand where you are coming from and I think it’s a testament to your willpower and strength that you have this level of blogging etc., up for so long. I identify with what’s happening to you, though we’re at different stages and maybe for different reasons. I am struggling more and more, have cut back on physically campaigning and protesting (also realised a bit late that people were using me & didn’t care about the effects on me) but it’s not enough. I seem to have got something else in a Fibro/other flare, about 3 Weeks ago and this Tuesday, can’t work out if it’s been caused by using an iPad bought for me by my son, with no keyboard. Or if it’s a new illness or something and the overuse of ipad is aggravating it, do know it’s scary as I can barely move, both my hands and wrists are so painful that painkillers won’t touch it and lose most use of the hands. It had improved from Tuesday to yesterday afternoon, then I used the iPad and it got worse again very quickly. I made an appointment to see my GP earlier this month and it’s taken 5 weeks to get an appointment, the longest ever, don’t have much faith in him but wil try to insist that I know this is different to my other illnesses and I want to be referred to a consultant/other experienced professional. I live on my own and don’t qualify for any county council/social services support, though they admit I have substantial needs. I have a son and Grandchildren who live about 20 miles away, but he’s a lone parent, with his own home, busy and highly stressful job and has his own disability and not in good health. I have my ex-partner, but do I ask him to come back and care for me on a very odd, non-partner/relationship basis? Not a good choice and I feel bad for having to think of it in this way. I’ve made some good friends in recent years here in my adopted city, mostly through campaigning, so they most;y ask me to go out to places and do things and I’m less and less up to it, so they may drift away? Anyway look after yourself, and look forward to your blogs/posts when and if you feel up to them. I am now using a wireless keyboard to do this, after taking ages to work out what to do with it!!

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    • I’m sorry to hear that you are in so much pain with your hands and wrists. You could be totally right about the ipad being the problem. Anything that makes you use your hands in a different way from they are used to, can cause a lot of pain. I hope that the wireless keyboard turns out to be your saviour. Give it a couple of weeks, and there is a good chance, you will feel an improvement.

      Getting care of any sort these days is really hard. The carers I have, we have to pay the majority of the cost. On the good side, there is an upper limit and any care I need after that, will be free. It’s still hard finding the funds needed for my currant needs, but there is no other choice. We are expected that no matter what, we need to care for ourselves, it’s wrong and it’s painful, but it’s the way it is.

      Take care 😊

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  24. Oh my dear one
    How very brave it is for you to look it in the eyes, and then share it with us. I understand that sense of knowing your ill but not accepting it as completely real until the words are spoken out loud.
    I am coming to a very similar place. I am delaying it as long as possible. I haven’t even tried to apply for employment as I have too many considerations to be endured by the employer. And, I am terrified of the rejection.
    I continue to struggle along my path of creating a positive path to living with chronic pain, but it moves oh so slowly. I just can’t let go of this one hope.
    I feel your truth so deeply.
    Thank you
    Hugs to you.

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  26. Gentle hugs! I feel your pain through the words you write. Sometimes all we can do is what we can do. You have to take care of yourself before you can take care of others, including your blog. Best wishes on your

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