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Health Update Time

The time has come to publish a blog that I’ve been writing gradually over the last three or so weeks. If you’ve been with my blog since the beginning you will know that writing has been an outlet for my emotions and has proven to be very therapeutic. However, it also lays me bare and it can be quite daunting knowing that my life is out there for the world and his wife to access and judge. That’s why I haven’t pressed publish on this post until now because it’s been a tricky few weeks and my writing is quite raw, but, it is my way of communicating so it seemed silly to write it and not share. I have no idea why but I find opening up verbally to the people I love really difficult. Not because they won’t listen, support and comfort, simply because I find it hard to put into words sometimes – odd when I can write without difficulty right?!

I’ll start from the beginning. A couple of Fridays ago Dad and I went to London to see Lumiere London. It’s something I’ve always wanted to go and see and take photos of and this year I felt strong enough to go and see some parts of it.  I cannot explain how wonderful those few hours in London were. Although cold, London was still. No wind, rain, it was at night so no sun…I was able to walk outside without intense pain on my head and face for the first time in well over a year and it felt liberating. So much so that I ignored all the other symptoms as they began to creep up – knees piercing, muscles contracting, headache niggling and fatigue enveloping me with each step. But I didn’t want it to end, I wanted a normal night and to enjoy the moment, a day or two pay back would be worth it for this moment.

 

Nah. My body was not happy with me. Saturday lulled me into a false sense of security as I woke up feeling not too dissimilar to when I over do things but by Saturday night I was in a world of pain and this continued day after day for almost nine days. This is often the case with ME, post exertion malaise will often only properly kick in until 24 hours after the activity. With this pay back came a world of grey and I couldn’t shift it. I couldn’t really focus on anything other than the pins and needles, the joint and muscle pain, the fatigue on top of fatigue and simply how low I felt. I was well aware that I wasn’t really talking to anyone, friends or mum and dad and I know how frustrating, irritating and annoying that must have been to live with but I couldn’t face it any other way. By talking I would cry and crying is exhausting and I literally didn’t have the space to exacerbate the hell I was experiencing. I wanted to be alone, in silence and darkness and to hibernate until it passed.

But for me, the hardest thing was a new symptom. Rage. Anger. I am not an angry person but honestly, I wanted to smash things. Break, punch, scream…I was so angry. Angry at myself because I hadn’t paced myself: I’d ignored all my CBT “training” and my body turned round and basically punished me for being so stupid. Then came the anger because I am done with this life I’m living in. For others I guess it’s easy to think I am doing well – I still smile, I’ve had a book published and I make cards and pom poms which is an improvement. I agree with that. BUT, and it’s a big but…I live every day at a level people take sick days for and when I push myself, what I experience is something most can’t contemplate because it’s hidden and it’s misunderstood. That place that I live in day-to-day is lonely and frustrating. I am not better, I am not well.

I did have a CBT session thankfully in which I cried…a lot…she knew something was up. And as always, she was fantastic at convincing me that I need to focus on the positive that I had such a lovely time in London and not to allow it to put me off doing it again because I need to throw caution to the wind sometimes and live. She explained it that if she, as a runner, suddenly went from running a mile and thinking she was doing well so went and ran a marathon the next day, her body would make her pay and that’s the equivalent of what I had done. And I get that, but as I said to her, what I did in London that night was a fraction of what I’d have done in my previous life and it just seems so cruel and unfair that this far down the line I still can’t.

I’m angry that the life I lead now when I have a good day, is like the couple of days after you recover from flu and think – phew I feel a bit more human today. We did laugh though when at one point she said – just tell me all the things you’re angry about, which I did and then added, “I hate that I’m making f**cking pom poms and I am capable of so much more!” It just sounded so juvenile and ungrateful that it jolted me a little. I love making crafts but I can’t make it into something I’d love to because I don’t have the brain or body capacity to, so when you break it down, I make pom poms when I used to teach and make a difference and I just feel like my brain and body is rotting and isn’t good for much.

It’s so hard accepting that you are experiencing a hellish few weeks but that when you feel “better” you will simply be back at the level that most people couldn’t cope with. I have forgotten what it feels like to wake up and feel refreshed from sleep, to have a day without pain, to wear make up or have hair, just to feel nice. It’s not a pleasant place to be and it’s a daily battle to keep taking steps forward and bury the negatives and focus on the positives.

I mean – I did warn you that this post is a brain dump of everything I’ve been feeling, it does seem over the top and desperate but I guess that is the truth of it at the moment. ME isn’t a straight path. You take a few steps forward and then from nowhere you are flung ten steps backwards. Being in such a dark place is scary which is why I am grateful for the antidepressants at the moment because I know I need them. It’s children’s mental health week this week and now, having lived with an illness that’s so hidden and misunderstood makes it so much more important to spread awareness for these types of illnesses because they can so easily be missed, misunderstood and belittled.

Thankfully, with the help of some puppy love, brownies and time, I am just about out the other side of the pay back from that Friday three weeks ago and I will now continue with my targets and pacing and claw back some of the steps I’ve taken backwards.

puppy

Remember, be kind to everyone you see. You never know what they’re dealing with.

Happy Thursday.

#hairlesshannah

 

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15 thoughts on “Health Update Time

  1. Sharon says:

    Oh Han I am so sorry to hear that you have had such a shitty few weeks. You deserve such amazing things in your life and I hope they come to you. I love you more than words can say. XxxX

    Liked by 1 person

  2. First, I know first-hand how difficult it is to put yourself out there (here) but I promise you that it helps others, like me, feel less alone, and hopefully it helps you too. Grieving our lives as we once knew them to be is rough business.

    And second, I’m so sorry you’re going through this, all of it. It’s so incredibly unfair. I fully understand feeling like you’re not reaching your potential. I’m painting silly little paintings after all. For the record, your pom poms are adorable. They make me smile. I also love your baked goods and crafts. You’re incredibly talented!

    Hoping things are on the upward swing for you. Spring is near, 💐 will bloom, sun ☀️ will shine, life will feel lighter. 😎 Sending hugs and 🥄🥄🥄💙

    Liked by 1 person

  3. Jo Marshall says:

    Your blogs are always thought provoking and have changed the way I think about a lot of things, not least about hidden illnesses. This blog has really made me think about how good we all are at hiding things from others, especially those we love, for fear of upsetting or worrying them. You are in a situation I can’t begin to imagine so empathy is not really possible. Can I just say that I am thinking of you and even often offer a small and quiet prayer for you – you never know…..

    Liked by 1 person

  4. cathgreen2015 says:

    Yes, it is shitty. Very shitty. You deserve every ounce of your anger and that can be healthy even necessary at times.
    Nothing that you do has been or is a waste of time or ‘silly.’ These are your attempts (and others in similar situations) to keep sane and be mindful – and yes, your poms poms are fab! Never underestimate the joy you bring to others with all of your makes and bakes – and I’m not even going to start telling you how much you are loved just for being you. We will keep telling you that -because you are… with or without hair… with or without this shitty illness. Keep believing in yourself Hannah, you give to so many – and have done all of your life- so don’t apologise for being angry.. ever. But keep focusing on what is to come… we are all nothing without hope. X x x

    Liked by 1 person

  5. Aw, sorry to hear you are having such a tough time. We all have bad days, but some people have an unfair amount of them. You are allowed to vent on here. We bloggers, are big supporters of each other. I’ve never been involved with a community quite like this one. I hope you feel better soon.

    Liked by 1 person

  6. Liz says:

    Sending you all my love Hannah, not sure what else to say apart from I’m thinking of you and only round the corner (with an adorable dog!) if you ever need to rant to someone not too close to you……..you may not be teaching at the moment but you are seriously talented in everything you do!
    #pompomqueen
    Xxx

    Liked by 1 person

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