#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.

#MentalHealthAwarenessWeek2019

(longest hashtag ever)

This week is mental health awareness week. It officially started yesterday but it was a mega busy day so did not manage to get anything up here although did schedule an instagram live for 7pm tonight @just_TUX for anyone that wants to join. Mental health has always been a bit of a taboo subject and not spoken about but why shouldnt it be. It is as organic as any other disease. It can be diagnosed and treated with medication just like a physical condition is so why is it so taboo. I think it is because it affects behaviour and you should supposedly be able to control behaviours. Not wanting to belittle mental health symptoms but with physical health you cant control a coughing fit in asthma just like you might not be able to stop repetitive activity in someone that has OCD. It comes on out with your control so what is different.

My blog had touched on mental health and how it has impacted my life but I have not explored it in more detail. Living with a chronic physical health condition the Dr’s focus on the physical side of things, the medications and the numbers they don’t tend to spend a lot of time asking about how you are managing mentally. It almost feels like it is out their remit. They are there to treat the asthma exacerbation and get you physically better but it is not until something major happens that they then maybe just maybe take your mental health into consideration.

Today I want to focus on denial, I have spent so long in denial for both my physical health and my mental health. I am getting better at speaking about my mental health but still not very good at it! I can write when I choose too and feel able to publish it here.

For me I have gone through a bit of a rollercoaster with my mental health. Having had such severe asthma for so long and being in denial about how much it was impacting on my life. I wanted everyone to see I was fine, I was pushing my body and my mind to the limit but so many thought it was just asthma or others thought it was just asthma that was bad because I was assumed to be a irresponsible student. I maybe was not always as responsible as I could have been but reflecting back a lot of that I think is me being in denial about how bad my asthma was and how much it was dictating and destroying my life. I often wonder now if I have some input from psychology then how would things have been different.

I have constantly been in and out of hospital with my asthma, from being rushed in with blues and twos to the resuscitation room, even being life flighted from one hospital to another over in Canada, countless intensive care admissions, 4 month long hospital admissions, central lines, blood gases, arterial lines, bed bound, tethered to machines just to live but until 8 years ago I never had any mental health input. Then I had 2 sessions with a psychologist but I cant say it did anything but then 4 years ago I was forced to go to see a psychologist but it has taken a while for it to really be impactful and make a difference to me.

I look back on it now and wonder if I had had psychological input would my health be any different from what it is now. It might not be but I am sure I would have been able to deal with my health and the experiences of it a lot better. In saying this I am not sure wether I would have been in the right frame of mind to accept the help to try and understand my condition. My way of dealing with things was to pretend it didn’t bother me or when dealing with hospital I trained myself to forget about what happened in the hospital. It was the only thing I knew how to manage it. The experiences you go through as a young adult who cant breathe is so humiliating, when you cant go to the toilet yourself or be left alone because your breathing is so bad and your blood pressure plummets it is easiest just to blank it out and forget about it. This I think did not do me any favours. I still find myself relapsing back to those ways as I just cant deal with what’s happening and not feeling strong enough to process it all. It is a work in progress and always will be to try as I try to balance the psychological aspects of living with a physical health condition.

Some aspects of my life I think I am still in denial about my health and how it really effects me. I hope others can read this and know it is normal to be in denial, it is normal to not want to acknowledge how unwell you are or that you’re not having a good day. Its ok to not be ok and its ok to ask for help. Even if you don’t want to talk there are other outlets- I will tell you now punching things are not the way to go about it and only end up with broken bones in your hand so writing I would say is one of the best options. No one has to see it if you don’t want or even just one person that you feel close to or even distant too. Everyone can find an outlet.

Everyone will feel in denial at some point with their health and sometimes we relapse not denial but it is ok. There is help out there. We cannot all be perfect all the time but know that we can come out the denial when we just find the best way that suits us and we are ready to accept our body, our health and our mind.

Out of negative situations there is positives, its just about looking at life in a different way.

“Just relax and concentrate on your breathing”

I smile to myself as I write this post for a number of reasons. It seems apt to write this while I can’t sleep because of my asthma and am sitting on the couch hunched over with a neb making it easier to breathe- I wish I could just relax back it would be so nice.

But I have the biggest smile because just about a year ago I was asked if I would be interested in writing an article for the British Medical Journal (BMJ). I agreed. It was for a patient series called “What your patient is thinking!”.

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I obviously focused on asthma, but concentrated on one specific part of asthma and that was during an exacerbation which results in you ending up in Accident and Emergency. The piece was to be written as a learning tool for Dr’s to help them make the patient experience a better one. Sometimes patients may have a bad experience in hospital and it is not because of lack of care but sometimes they way they are spoken to, or they are not listened to etc. There can be a variety of little things that can really make a difference to the outcome for the patient.

I had three key points I wanted to share, and am pleased that so many people have commented on the piece saying they have felt the same but they thought they were the only ones who felt as they did. The points were:

let the patient be comfy- when struggling to breathe there is no comfy position but a patient will have a way they want to sit or find they get some respite. I like to sit bolt up right or brace myself against my knees leaning forward a bit.

Please don’t say “just relax and concentrate on your breathing”- it seems like a very kind an innocent thing to say but it gets really wearing on a patient when everyone they see in A&E tells them this but in reality you can’t relax and the more you concentrate on your breathing the more you focus on how hard and terrifying the situation is and therefore end up making the whole thing worse by adding panic into the mix of an asthma attack. Often as medical practitioners we don’t think how the patient may feel hen we try to say things of comfort like this. It is my pet peeve in hospital and grates on me when someone says that!

Lastly was to give the patient time to talk, it may look difficult and hard work but if the patient is wanting to talk let them, or offer them pen and paper if it looks like it is too much work. Often the patient can tell you vital information about their asthma and things that will help which can help speed the recovery of the attack up. I do find that I want to talk unless I am at the point of exhaustion and even breathing just feels like too big an effort. By focusing on getting my words out I am not focusing on the difficulty breathing and can find talking distracting sometimes. If I don’t want to talk I won’t but I really appreciate it when a Dr will take the time to listen even if it is 2-3 words between breathes.

I hate to think that others go through hard times with their asthma and have rough experiences in A and E but I have really appreciated the comments from people who read the article and that they can relate to it. I didnt only want to write it for me but for everyone who attends anywhere with asthma, or an asthma attack as generally we all feel kind of similar so I hope that more people can read this and maybe perhaps make even just one patients experience of asthma better.

I am also having a small chuckle to myself because I still cannot believe I have published an article in a journal. When I did Sports Science when I first left school I always dreamt about having a journal published but back then never did I think it would be something like this. If I am honest being published was a bit of a pipe dream. Especially as I got an E at my A Level English despite working my ass off but thankfully (i think thats the right word) when I sat an entrance test to do my Nursing they picked up that I am pretty badly dyslexic because I write my letters back to front and some other things. This discovery has been a blessing as it means I may very well get more things published as I have really enjoyed doing it and really enjoy writing wether it is for my blog or PPI stuff or work. I do wonder though what my English teacher would think now after years of despair trying to teach me- it was like teaching the unteachable!

I want to say a massive Thank you to all the kind comments I have received about my piece and if you want to print it and share it with others please do. The more people who read it the better!!

http://www.bmj.com/content/351/bmj.h6185