Unwanted visitors

So many people I know have had some, metaphorically speaking, unwanted visitors knock on their doors lately that you can’t turn away or shout at or send an e-mail to because they are part of you. Illnesses, diseases, things that you can’t slam the door on.

I am obviously purely speaking about my situation and therefore my experiences, feelings and emotions so they may not correlate with anyone else so don’t get cross if you don’t agree!

My illness is hidden so I find myself in a situation where I have days when I look better than others which seems to indicate to people that I’m getting better. I’m not. That is why it is called a hidden/invisible illness and that is why it is so frustrating. I think I become even more prone to this kind of comment because I don’t show my true feelings and emotions so therefore it is even easier for people to assume I am getting better and feeling great. I’m not.

Because my ‘complex’ case is STILL under review by many doctors and specialists, it seems like I am forever waiting for answers, fighting tirelessly to get people to fight for me! I’m 16 months into this now which I know is a long time. So much can happen in 16 months and has done to most of the people in my life – good, great, bad and bloody awful. But it also means that due to no fault of anyone, and I mean that wholeheartedly, life goes on. My life is stuck but other people’s aren’t. So therefore I have become lonelier, felt more isolated and even more desperate for healthcare professionals to take me and my life seriously and help me.

But it seems that healthcare professionals, even those at supposedly the best hospitals in the country, don’t feel or see the urgency in my eyes. I am acutely aware that what I have is not life threatening and don’t ever want to compare it to those who are living with those illnesses or are no longer with us because of them, but what I am living with is totally life changing for me. Last week I met with the first doctor in months that actually listened, took time and an interest in me and gave me hope. Only for that to be totally shattered when he phoned me Friday to tell me most of what he’d said was incorrect. The referral will take months and even then may not be accepted as it has to go through funding applications and that the help he’d promised in the interim was for those who live in Southwark only – when did I ever tell him I lived there?! So here I sit once again, being totally let down by the only people who have the power to help me.

I don’t recognise my life anymore. I described it this week by saying I feel like I have an existence, not a life. Most of the doctors and specialists fail to see me as a human. As a 30-year-old woman who has so many hopes, dreams and aspirations,  who’s existence is mainly lived out within the four walls of her bedroom. The pain I have is constant and worsening, I’m experiencing pain insomnia on levels I never knew existed. It takes an age to get up and get ready and in all honesty it’s taking all I have at the moment to even do this because really, bed is the place that comforts me most regardless of the pain.

In bed, I only have to move to change position and shift the pain locality. In bed it’s quiet, the curtains are shut and it’s dark. I can drift in and out of consciousness, cry or just contemplate and dream. If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth. If I’m up I can’t manage to do much which frustrates me. My hands are becoming even more painful so even typing for long periods hurts. All I really have is my blog to make me feel purposeful but creating the content for it often causes more pain than I feel the blog is worth. But then through the blog comes the communities I’ve become part of – the spoonie and chronic illness heroes and heroines that give me hope and strength are incredible.

The doctors don’t see the life that I seem to have left behind. I can’t drive, I can’t socialise, I can’t stay up late, I can’t shop or treat myself, I can’t save for holidays or beautiful bags and shoes, I can’t treat my friends and family, I can’t blare my music out and dance around my bedroom whilst getting ready for a girls night out. I can’t even drink a cider because of the tablet concoctions I take daily – it comes to something when a practically teetotaler is craving a cider! Lately, I’ve even come to wish I hadn’t experienced the life I had in Dubai because life was so good. Even though work is more than likely the trigger for this situation, socially life was amazing and the opportunities that fell into my path enriched me more as a person than I ever dreamed of, I had plans that were unfinished and unaccomplished which means I know what I’m missing and then I start to resent that.

I know there is no easy fix to this. I know there is a long road ahead and so much more uncertainty but all I can tell you is that I wish this bloody unwanted visitor would f**k off out of my circle as quickly as it arrived.

I read a quote another spoonie posted the other day and I loved it – it’s not me that’s unreliable, it’s my health.

Rant over! Be nice to people today and remember, they may be going through something that you just might not be able to see. So be kind.

Happy Saturday.

#hairlesshannah

 

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24 thoughts on “Unwanted visitors

  1. Sharon says:

    Hannah my lovely, beautiful and amazing friend. I wish your unwanted visitor would f#$k off too.
    Your plans and dreams and aspirations will happen. And when they do..wow..they will be so worth the wait!!!
    Love you so much xxx

    Liked by 1 person

  2. Jill says:

    Hannah, I just read your latest blog and find it impossible to know what to say. The frustration you must feel with the lack of support you appear to be receiving is unbelievable to me.
    I would love to be able to wave a magic wand to take away all your pain and make things better.
    There’s nothing anybody can say which will change your situation but there seems to be so many people who think you are the most wonderful person and whatever your rotten illness throws at you nothing can change that.
    Much love jill xxxx

    Liked by 1 person

  3. Cath Green says:

    It’s all shite and the ‘treatment’ you’ve had from many is unprofessional and in some cases in humane. We’ll keep on trucking along and you will get better, we will all help you get there. We love you so much xxxx

    Liked by 1 person

  4. One bright shiny moment in all of this is that you have this blog and other social media to connect with people. When I fell into a deep depression in college the internet was just beginning and I had no one that I could really reach out to in the way you do on here. Hopefully your story will touch someone in the same position or someone who has and extra moment to talk. It might not be the “normal” that you’re used to, but at least there is someone on the other end of the internet somewhere when you want to reach out.

    Liked by 1 person

  5. Dear Hannah. Reading your post as a pwme I absolutely sympathise. My heart goes out to you and so many others like us, with autoimmune diseases and such. It’s wonderful (and rare) to encounter a doctor who listens. It’s bloody hard not to lose hope while we’re in endless waiting loops re: tests, benefits, any kind of support. Just realise I wrote pwme without hesitation, as if that was what/who I had become, and all my other qualities, abilities and idiosyncrasies were subsumed by having M.E. (and P.O.T.S.). Well, in a way they are, fatigue (and often terrible pain) eats – almost – everything. I guess we ourselves still have to try to take care of ourselves as best we can, and rescue our (formerly well) selves from drowning, dreams and aspirations and all, with the last ounce of our strength, with a little help from friends. Through writing (my way, and maybe yours too), through connecting, through sharing. So: I hear you, and hope support will come to you in any way you need. And soon. Mxx

    Liked by 1 person

  6. Similar experiences with M.E., but new medical research proves it’s physical. It’s still in the beginning stages, but: finally! All the disbelief over the years. the waiting, feeling one has to beg for attention by the medical profession, and convince institutions and even people that one is seriously ill, is pretty hard on the psyche and enough to depress anyone. All the best!

    Liked by 1 person

  7. I’m so sorry you’re going through all this 😦 I’m in a similar boat right now with doctors shipping me here, there and everywhere for referrals and tests and no answers. I’m waiting on two referrals right now, one of which that is basically the consensus that it’s in my head/stress related.

    I generally refer to my body as it’s own separate entity that likes to ruin my fun on a daily basis 😛

    Liked by 1 person

    • I’m sorry you’re going through it too. I do understand, I think, how stress may have been the trigger BUT this isn’t in my head, this is real. The pain is real. The change to my life is real. I’ve dealt with it with positivity so far but now, with the way they’re talking to and about me, I’m finding it hard because I feel like I should be doubting myself and my body?!

      Like

  8. Hi. I found your blog through another sister blogger. Just scrolling through and this one really struck a cord with me. The sentence, ” If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth.” Wow! That is how I feel all the time. Also when I have a good day, people think I’m healing… Nope, chronic means chronic, right? And… grieving the life I had before! That’ hard. I’m almost 50 yrs old, how long does it take to start a new life with a new body and mind that is so very different than the one I used to occupy. Glad to have found you ❤

    Liked by 1 person

    • Hi, I’m so glad you found my blog and hat it resonated with you. Finding people who understand really helps, or at least I know it’s helped me. This little strong community is a lifeline for me so I’m glad I can now connect wit you too! Hope your day is going okay xx

      Liked by 1 person

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