How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!

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