Seven Days In

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So we’re now seven days in to 2014 and I have spent most of the time in bed.

I’ve not even been able to spend the time in bed productively – setting up my website or creating lesson plans as I had intended to do with the bad days this year. I’m not sure of the cause behind this latest POTS flare, whether it’s the series of weather fronts that have been battering the UK day after day, my body recovering from Christmas, whether I have an infection or a combination of them all. Whatever the cause it’s hitting me hard; every day this year I have either woken up with, or developed a migraine, no amount of essential oils, sumatriptan or heat has soothed them and I’ve been sleeping for about 12 hours each night in an attempt to get my body back on track.

In addition to the migraines I’ve been dealing with syncope, nausea and a general ache through my whole body, which feels like the pain is radiating from my skin into my bones.

With this in mind I wanted to highlight how isolating chronic illnesses are. Just based on my current symptoms: the body aches mean that I can’t stand being touched, so I am constantly frustrating my other half, who struggles seeing me in pain and understandably just wants to hug me to make me feel better. The migraines are making me irritable with anyone who dares to try  communicating with me and limits my time on social media. With fainting when vertical for more than five minutes leaving the flat just isn’t an option. Previously the isolation has fed my anxiety and depression and just made matters worse.

I know I’m in a more fortunate position than a lot of people, and bearing this in mind I am determined to make 2014 different.

It has got off to a bad start, however, tomorrow I am joining some of my friends in the 100 Happy Days project and will find something to be happy about, even if it is just something from my bed!

2013 taught me that no matter what I think society thinks*, it’s ok for me to rest if I am ill and hopefully in 2014 I can not only keep this up but also learn to accept POTS and myself.

I will talk more about isolation, acceptance and 100 Happy Days soon, but for now I need to switch off the computer and rest.

 

 

* I will write about this soon.

Searching for Silver Linings

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I hadn’t realised how long it was since I last wrote something, so in the spirit of New Years resolutions I aim to write more regularly again (POTS willing).

I know there have been hundreds of reviews of 2013 and they are all far more interesting than mine (and more timely) but I feel the need to round up 2013 so I can move into 2014 with a fresh outlook and realising I have made achievements this year, despite the setbacks.

In the theme of closing the door to 2013, I returned to my old place of work for the first time in 17 months (since I had my breakdown) on the 30th December. Yes, I was forced to resign in February so I didn’t go back to my exact work place, more the building. I still ran the risk of running into a former colleague, or worse still my manager. I also tested my anxiety facing the crowds that I knew would be there. Knowing I survived, despite still feeling residual anxiety five hours later means I can try to move in to 2014 without the restriction of saying to people I can’t meet them there.

Rather than focussing on the negatives I am looking for the positives or silver linings in five of the events that have occurred within my year.

My Grandma died. I’ve just spent ten minutes looking at those three words. Death isn’t new to me but this hit me hard. She became ill and was hospitalised just before I had my breakdown and had a horrible final eight months of life, so by the time she died, she was ready. I found it easier to deal with at the time than I am now. I was relieved that she was no longer in pain, she wasn’t living as we know it and didn’t want to live any more. Obviously there is a silver lining in her being pain free, however, I’d clearly much rather she was alive and pain free. So the main silver lining I gained from this was the fact I realised how supportive my friends are and how they were there for me throughout her illness and time in hospital, and were considerate and kind throughout the whole year as I faced her birthday and Christmas without her.

I began taking midodrine for Postural Orthostatic Tachycardia Syndrome. Throughout the whole process of becoming more and more ill, and finally discovering I had POTS I felt like I had lost all control. It was tiring having to explain to doctor after doctor what my symptoms were and how drinking more water and eating salty foods was doing nothing. I am grateful that I have been referred to a cardiac specialist who knows about POTS and although I have only met his registrars I feel like I am some how taking control of my illness.

I finished CBT and started and finished Schema Therapy. Therapy was hard. Both times. But when I started CBT in December 2012 I couldn’t leave the flat on my own, at all. I was scared of any form of communication. I had alienated myself from the majority of people I know (had it not been for a few amazing individuals who refused to give up on me I would have lost everyone I think). Being given CBT and schema therapy are huge silver linings and I am incredibly lucky to have been given the support I have, especially when I hear of people two years down the line still waiting for any form of talking therapy. I also made four amazing new friends from schema therapy who are a constant source of support.

I started seeing a new psychiatrist. I hadn’t seen one since being at University (it feels like a life time ago), but I had been changed from first line medication to first line medication by my GP, who as understanding as he is, admits he is not as knowledgeable as psychiatrists, nor is he allowed to prescribe what they can. My psychiatrist is lovely. She had thought about things I hadn’t even considered. She is patient and helpful and listens. I have been very lucky with the care I have been given so far. I am by no means over the mountain of mental illness but I like to think I’ve been given some pretty decent equipment to help me.

I resigned. I loved the job I had when I had my breakdown. I loved working with people, helping them, listening to them and seeing people develop from the person who had been recruited, etc. but the environment I worked in was toxic. Anyone with a chronic illness or disability will know how hard it is to work full time in any circumstance but when the environment you work in is unsupportive of that (despite their claims otherwise) it makes it all the more difficult. I won’t go in to the details but I was faced with two possibilities – resign or be dismissed for ill health. I chose the former, hoping that my health would take a change of fortune and I would be able to work again in the near future. This has not been the case.; however, in leaving work I have been able to think about what I’d love to do and put a plan in to action.

2013 taught me that there are some amazing people out there and I feel very lucky to have met or corresponded with them. I have found incredible support through Twitter. I am so grateful to all the people I interact with (be it on or offline) and hopefully never take it for granted, without you I would not be writing this today.

I fully expect 2014 to be hard: I turn 30, I hope to set up my business properly, start work again and write regularly; not to mention whatever the fates decide to throw at me this year, but I know I have support and that somehow makes any event seem more manageable and will collect silver linings along my journey.

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