#MentalHealthAwarenessWeek2019 Acceptance

In my first post for #MentalHealthAwarenessWeek2019 I looked at dealing with being in denial. Wether that denial be of your physical health or your mental health, I am sure it is something we have all done. Tried to brush things off and say I’m fine. But what does saying fine really mean. To me now saying “fine” says a lot more that it means. To me when someone says they are fine it means they don’t know how to explain how they feel, or they don’t want to admit how they feel, or they don’t know how they feel. This happened just tonight speaking to a friend whose response to my how are you? was Im fine when clearly they were not.

I think we all just jump to I’m fine because we think it will not lead to anymore questions and we can move on to a different topic. Why do I think this? I used to be that person and still am sometimes. I would think if I said I was fine then I would be left alone to get on with things and could feel rubbish with out anybody pestering me. When I first started seeing a psychologist we spent a session talking about “Im fine” and why we use it. It was interesting to explore it further. It caused me a lot of pain as it brought up thoughts I didnt want to deal with, and made me realise my situation but now I look back and see I needed it otherwise I would still be telling people I am fine when I am falling apart.

Exploring the I’m fine became a lot more. It helped me accept my health. It helped me move out of a denial phase where I wanted to pretend to everyone I was ok. I didnt want to be the weak one who struggled to breathe or could work like everyone else. I didnt want a condition that can be considered by many as “just asthma” to rule my life and dictate it so if I didnt knowledge it to other people then everyone was happy as larry. All this did was hurt me more as no one else was getting more unwell or lonely because of my asthma and my health it was only me I was punishing.

Opening up and being able to explain how you feel is hard. I started off by trying to verbalise it but I found doing word clusters easier. I had 3 sheets of paper and each one contained a word: asthma, physically, and mentally. I also had coloured pens where I then wrote down how each word made me feel right there and then in one colour, in another colour I wrote down how i have felt in the past and then in a third colour I wrote down how I wanted to feel about the words.

This task made me accept my health both physically and mentally. It made me acknowledge that asthma is not just a physical condition but impacts you mentally as well. By treating each part in isolation I was never going to be able to really get to where I want to go. One each sheet of paper I had the same words particularly with where I wanted to be in the future. I had a common goal across everything and this is when I realised that to achieve that goal I need to look at every aspect of my health and how my condition is effecting me.

I found also that by doing this task I accept my health. I was able to see where I was and where I wanted to go. Rather than focusing on the here and now I was able to set goals for the future both short and long term. Goals which are achievable but also including some that are going to push me because you don’t want to make life too easy. Doing this meant I evaluated myself there and then, how I was feeling, what I needed to do to keep me stable or what I needed to do to change the situation I was in if it was a bad day. Accepting that you can have bad days is a big part of this but to accept bad days I found I need to have strategies on how to fix these bad days. It was not about looking for a fix such as a cure but looking at things that can still be done and achieved despite you not feeling well. For me a big part of not feeling well was feeling like I was failing. If I was not well enough to work or when i cut my hours cut down I found myself sitting at home thinking I should be at work just now but am not because of my lungs. Accepting that this is where I was at that point and doing something to change it even though I am not able to change my lungs I can change what my brain is doing. For me that is being involved in research. No matter how unwell I feel I will always be able to be involved in research.

One of the other big things about moving from denial to acceptance is evaluating yourself. You are going to have days where you slip back into the Im fine I don’t want to talk about things from time to time but if you can reflect back on why you felt like that. It might be that it was the people you were around you at the time and you did not want to share your feelings with them. This is ok. Everything has to be done in your own pace. Some people maybe able to reflect on themselves and feel they can shout from the rooftops about their condition and how it makes them feel where others cant tell a sole. Everyone is different and everyone has their own way of dealing with it.

I would be really interested to hear about how others found self acceptance of their health when they had previously been in denial about anything being wrong with them. I am always intrigued as to what skills others utilise to help them.

The above is just my experience. It might not be right for anyone else, but I found this is how I got my head around things and accepting how my asthma is impacting on life and how I felt about my asthma, the impact it has on my physical and mental health too.

One thing I want to get across this week is that a physical health condition is not isolated to just the physical body, and a mental health condition is not just associated with your mental state. They all over lap with each other and to truly get the best management for you everything needs to be looked at not just the condition in isolation.

AUKCAR PPI update

cropped-aukcartitle_nostrapline_300dpi.png

I still pinch myself as I can’t believe I am involved in such a fantastic research centre. AUKCAR is a unique virtual centre incorporating 13 institutes which all have teams of dedicated researchers wanting to make the lives of people with asthma better by addressing three key areas: encourage good asthma control, maximise treatment benefits, and reduce asthma exacerbations and asthma deaths. Something which is desperately needed as every day there will be someone somewhere in the UK dealing with the consequences of a loved one dying from an asthma attack.

Since the start of my involvement in AUKCAR I have done things and been involved in things I would never have even dreamt about. By the end of this year (or perhaps January depending on whether it is Dec or Jan issue) I will have had an article published in the British Medical Journal, I will have been to 2 annual scientific meetings for AUKCAR, I have commented on a variety of different things, attended focus groups, sat on patient advisory panels, been part of the PhD reviewing team, spoken to PhD students via a webinar to give them the full story of what living with asthma is really like, but for me there are two things I am particularly proud of, firstly being invited to join the Centre Management Committee (CMC) for AUKCAR and secondly is to be part of setting up the Children and Young Persons group.

Back when I was first asked about joining AUKCAR’s PPI Group I was ecstatic about the opportunity to be involved in such a group breaking centre. I fell into it and had absolute no idea where it would take me- all I knew at the start was that I could do as much or as little as I wanted. It turned out I love doing all of the different tasks we get asked to do so find over the last year and a half I have done quite a few things!! As emails came through I would read things and comment and find the different projects so fascinating that it was really no chore to spend some time putting comments together for the researchers.

From the outset of joining AUKCAR I knew I would be involved in helping with the children and young peoples (CYP) side of things and trying to build PPI for the CYP group. When it started out I really didnt know what I was doing but in time we (myself, a research fellow from AUKCAR and an asthma nurse specialist at the RHSC in Edinburgh) got a group of children and young people and have had several meetings where they have all been so enthusiastic and we have done a few bits of PPI but our first big PPI task will be in the next meeting where a researcher is coming to speak to them and get their feedback. The enjoyment you see them having is great and they have so much enthusiasm that often we don’t get through what was planned as they have so many ideas and there is much discussion. We were worried at the start about how to get children involved and if they would get bored but it has been quite the opposite. It is really exciting. Even more so now that there is a group name and logo designed which will be launched soon!!!

Earlier this week I went to my first CMC meeting for AUKCAR. I never dreamt I would ever be part of this, it never really registered with me what the CMC was when I was at my first scientific meeting in Oxford last year. But now having been invited to be part of it I think it is a big deal. To me it is a big deal. It means being part of the team that manage the centre. I was sitting in a room with what can only be described as some the best asthma researchers in the world. I really didnt know what to expect. I have met all of them several times before and all of them are lovely but when asked my opinions on something I was kind of shocked as to me these are the guys who do all this research and understand all these statistics etc that fly around yet they were asking for my views, initially I was thinking I only have asthma what do they want to know from me, but as the meeting went on it was so clear to see how much the centre value the input from the “people who just have asthma” and see it as far more than that. Their research is shaped around what the needs of people with asthma are which is what makes the centre so unique. Patient and Public Involvement (PPI) is embedded in all the research they do from PhD researchers, early career researchers to the researchers at the top of their field. No research is exempt from PPI. The meeting was a really good experience even if the statistics and data parts went totally over my head. I am really excited and looking forward to the next few months with the annual scientific meeting, going to the FARR Frontiers meeting thing and another CYP Group so lots going on.