#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.

Back feeling confident

After a good few days feeling totally down in the dumps, sorry for myself and thinking the light that was at the end of the tunnel had totally gone out I am feeling more confident and the light is coming back and I don’t think all the hard work I have put in get better is wasted. It was still worth it and this was only a minor set back in a road to proper asthma control and good health.

To say I thought that I was back to square one would be an under statement. I had visions of spending more time off work and more time in hospital and even more time on high dose oral steroids. I was full of doom and gloom and felt the best thing to do was give up. I found it hard not to think like that given my past history for getting back on track and then it all going down the plug. I really didnt want that to happen again but almost felt it was inevitable.

I managed to change my mindset and think that this time I was stronger, fitter and mentally in a better head space that I can beat this and will get back on top and enjoying myself again. I can’t expect to not have set backs and unless I lived in a bubble I would not be immune to getting colds and infections so just need to get on with it and be sensible. After some vitamin C, early nights and anti biotics I am starting to feel better. I am finding my best time of day is the afternoon. First thing in the morning I am not so good and again last thing at night I get this hacking cough but nights are always a bit tricky for me anyway. For as long as I remember my asthma at night has always been bad so for it to be bad just now is not surprising.

I must add work I have done with a psychologist who looks in to coping methods for people with long term conditions has helped as well. Changing how I view set backs and not see them as failure has helped. I would often see a set back as failed to achieve control rather than a natural hiccup that comes with having a long term condition that probably won’t go away. Life is always going to have hiccups but it is how I deal with them is important to recovering and keeping well. Accepting that things happen and sometimes there is no control or no way to stop them but learn from what has happened and take positives from it.

It s easy for me to sit now and write this now but a few days ago I would never have been able to look to the good or rationalise this blip as I have today and I hope that I will in time be able to not see every dip as going back to square one but rather view it as it is.. a dip that will go up again and back to where I was and not a slippery downhill.

Its good to see things going the right way and changing the way I am thinking about it all. It has helped me cope a lot with it now.

Understanding how stress can really impact on you physically.

One of the triggers for my asthma is stress. I often feel that I just jump from one stressful situation to the next no matter how hard I try to avoid it. I previously thought i was really weak because stress could have such an effect on my physical health. There are still so many days where I won’t accept that stress could be what is contributing to my feeling rubbish and my asthma being so unstable. Slowly I am changing my way of thinking and actually seeing that the more I fight against the idea that stress is making my asthma bad the more stressed I am actually getting as I am trying to find some other cause. Stress is not the only trigger for my asthma but it is one of them.

One of the real benefits I have found from going back to my old consultant is that she knows me really well and she can tell if I am stressed etc and will tell me straight up what she thinks. Even if I try to convince her otherwise I must admit she is right. She sent me to see a psychologist which once again I tried convince her I was ok and didnt need to go but I am glad I went. It helps to get different tools to use in everyday life to minimise the physical effects stress can have.

Over the past while I have been really struggling with all aspects of life I guess in a way things just got on top of me. I think mainly because you do something to help someone and basically you get kicked for it leaving me thinking I made the worse decision in my life. I kept these thoughts to myself and it really did eat me up inside until a really small incident happened which was the straw that broke the camels back. I had a very long chat with my step brother and sister and law and did a lot of thinking and came to the conclusion I need to look out for myself and do what is best for me in doing this others may get hurt but I am getting hurt and not only mentally but it is having a bad effect on my asthma. It infuriates me when someone who is meant to be someone you trust and is family but can screw so many people just for their own gain. I need to do what is in my best interest so after a lot of thinking and writing various letters to work how best to say what I need to.

I have noticed a difference this week as I feel so much better and I think its because I don’t have this weight and regret on me anymore. I have been sleeping so much better, been able to play softball with my team  as well as going out for dinner after the match. I was also able to play golf after work a few times too. Being able to do this things have boosted me and I have been able to forget about my worries. I hope the situation sorts out and if it doesn’t I know I have done what I need to to alleviate my stress.

Now I am looking forward to more good health and enjoy the summer!

Learning to be kind to yourself.

Recently I have found it really tough trying to deal with everyday life and my asthma together. It felt like a full-time job just staying well, making sure I took all my treatment etc and then live life too. It was just way too much physically and mentally.

When dealing with physical health troubles there is so much we push ourselves to do and can often end up pushing ourselves too far because you have that spell of feeling well so everything gets crammed into that small window of time with no care for how you will feel after. This is something I am very guilty of. I will feel well so do everything and anything just like others do. And I feel great doing it. The adrenaline rush of being with friends and just being out and about leaves you feeling on a high and part of “normal” society. Soon after you crash back to earth with a bang.

I find the bang leaves me focusing on all the negatives about what I now can’t do rather than all I have done to end up in such a situation. I find I can’t rationalise sometimes that I did all this good stuff and that is why I feel crap. I think the other way round. I feel crap so now I can’t do what I want to do.

It is a cycle of peaks and troughs with each peak getting that little bit smaller and the trough getting that little bit bigger.

I realised this was not helping me physically or mentally. I went to see a psychologist who specialises in dealing with people with long term health conditions. He actually wrote my anticipatory care plan for when in hospital so know him already and had a good rapport so was looking forward to the appointment.

I went in with a plan of what I wanted to discuss and what I wanted to achieve. Something I was told not to do as I would then set myself up for not achieving goals I set myself but anyway do I ever listen…it seems no!

I took loads from the appointment but 2 things really helped an can be put to use straight away but may take some practice before I get it right.

The first was to allow me to be kind to myself. It took me a while to understand this but after explaining about how people have a part of their brain which determines their drive and another part which allows them to be kind to self I could see where I was going wrong.

From my background of playing sport and being very competitive with it I am very driven. I want to succeed at the best I can, I won’t quit until I reached a goal. I do this in all parts of my life. I will drive and drive and keeping pushing to be the best and achieve the best. In some settings this is good- particularly sport but in health this is not good and its not doing me any favours. I do not allow kindness to self. I tried to argue with the idea that I did and this was when I took a break in a day and rested but this was not what he was meaning. He descried it as lifting my foot off the pedal and applying the break a little bit. I see resting now as something I have to do because if I don’t I will fail at what I want- but in doing this I am not actually resting my body as I am driving myself to rest. I need to accept that my body won’t do all I want it to do but if I allow myself time, rest and recovery I will be able to do more and more often rather than fitting everything in in a short space of time like I do just now!

I have put this in practice already by planning my week better and having evenings I call rest evenings where I go to bed earlier than usual and read my book and try to switch off. I have also planned my weekends to allow myself more time to rest for the week but still doing somethings for example I have a awards dinner on Friday night and lacrosse on saturday afternoon (not sure how much I will play but it still counts), so for Sunday I have planned to spend the morning getting ready for the week and the afternoon watching a film and just chilling out. Have a really good dinner and be ready for the next week. I am not sure how this will go but I hope that I may feel good for it. Time will tell.

The other thing we discussed a lot was about CONTROL. Being a naturally driven person I like to have control in my life and control of my life. I like to have my destiny in my hands and therefore my future dictated by my decisions. This is something I don’t have and have not had for a long time. In the asthma world so to speak to word control is all over the place- mainly when discussing how stable or unstable your asthma is and how much control or lack of you have, we do the asthma control test again to check control. It feels I can never get away from it yet strive to have it all the time.

I desperately want control of my asthma so I can live my life without fear of attacks, or fear of losing my job, without dealing with medications, side effects of medication, not having to go to numerous hospital appointments throughout the year. It would be so great to say I had control. Instead of telling everyone I am trying to get control but not there yet. It often feels I have no control over it. There is no prediction to when I may or may not have an attack, I cannot control the uncontrollable such as external factors like cigarette smoke, pollen, building works. I can’t even really control my medication. The only control I do have is about taking my medication. I control when I take it but other than that there is not much.

I need to work on not needing to have control. And rationalise that there are something you can’t control but to focus on controlling what I can. In doing this I won’t set myself up for failures and frustration when I don’t get to where I want to. By planning my time better I am controlling when I can do things and when I can’t rather than having to listen to when my body has had enough and stop. By planning things and get a good balance I hope I won’t  go back to the ways of filling my good days with loads and then suffering after.

Only time will tell if these things work or not but fingers crossed they do!

Small steps will make big changes.

Today has been one of those days where bits and pieces happened and the end result should make a huge difference.

Today was a particularly bad day breathing wise. I knew I was starting late for work as I was due time back but nebbing hourly from 5am was not the way I planned to spend my lie in!! So not a good start. The day physically didn’t change much for me. It almost felt suffocating at times. It was hard but I got through the day and remarkably in the last hour my breathing has eased up….40mg of prednisilone will do that I guess and some painkillers!! But thats not the point of the this post.

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So I was saying lots of little things happened today which were all totally unlinked and all events/ emails/ letters were from different people who have no interaction at all but everything happened during the course of today (I am superstitious and since my Uncle died odd things have happened and I just wonder if he is responsible for today….dont laugh. I used to laugh at people who had thoughts like that until it happened to me).

First off I read the first of many emails regarding the volunteer stuff I do from AUKCAR. The email meant a lot. Much more than the person who sent it knows. I comment on PhD’s students participant information letters to make sure they are appropriate and could be understood by those targeted. I really enjoy doing this. But the student emailed one of the PPI team about the feedback. This team member then emailed to say how much my help was appreciated etc. It was such a positive email and really made me happy. I love doing what I do and even if I got no feedback about what I did I would still do it. Being able to do something I enjoy and knowing it is helping someone else is so rewarding. Much more than fundraising. So this was the first thing.

I then read another email about a Long Term Conditions report which I spoke to a member of staff about and although I don’t want to mix what I do with my outside life and work together I think the results from the report are really pertinent especially given our work is dealing with patients who also have a long term condition.

It was also great to see our Young Patients Group starting to evolve and dates being set for focus groups but not much to say about that.

The last thing I guess which is what role everything from today together is that when I got home from work to open my post I had a letter from the Royal Infirmary. I hate getting letters from them because it is either for appointments with respiratory or cardiology, occupational health or charge nurse doing promoting attendance to work meeting. To my relief it was none of the previous. Instead it was from the consultant researcher leading the PACT study in Edinburgh. Basically putting together care plans for people who have a long term condition who end up presenting acutely unwell to A and E. This care plan is meant to aid Drs treating people. To me this is a massive thing. When I lived in England I had one and it was followed very closely, since moving back to Scotland I have had nothing and this has made some A and E visits very difficult. The care plan along with all the important things like how to treat me, a little bit about my asthma, my medication, allergies etc it also has a bit about patient preferences which is almost the most important part. For example 2 things on mine which can make an admission very stressful is Drs trying to guess what your saying and also them fighting for an artery for a blood gas and not listening. My right wrist a vein runs over the artery so always yields a venous sample. My left wrist is so hard and scarred that the needle bounces off the artery so brachial ABG’s or femoral stabs need to be done. Most Drs won’t do brachial because of clot risk so it can sometimes be distressing trying to make them understand. Having an ABG is not like having a normal blood test where I don’t care where they poke about- it doesn’t hurt so they can suit themselves.

So this was a huge positive thing to know I have this care plan and to know it is now on the hospital computer system so whenever I am admitted the Drs will have easy access to it. That was not the only good thing to come in this letter.

The researcher also mentioned that he had spoken to my consultant who wants to meet up the three of us to go more in depth about the best emergency treatment but also the researcher mentioned about my involvement with AUKCAR. I had not told con about this not because I was hiding it but with him being new I just had not had time in appointments. So he wants to meet to discuss it further to as he is interested in it. Which is great especially after I had a rather cool reception about it from people previously involved in my asthma care.

I feel that all these things today are little steps all completely separate but all so closely linked to one common cause and that is to make asthma control better, better self management and ultimately better patient experience and a better patient/ asthmatic. It just so happened it all happened today but I was glad of it. It made me even more focused on wanting to continue doing what I do with AUKCAR and grab all opportunities with both hands. In the past people have been cautious and not wanting me to do too much as I am a volunteer but I love doing it and being affected by asthma so much, to know that there are people out there trying to make a difference for people like me. If I can help researcher to understand better, or give advice, or just show where the weaknesses are in asthma it makes it so worthwhile. I don’t really even have to force myself to sit down and reply to emails or comment on abstracts or information leaflets, it just comes and is enjoyable.

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Although today has been a real struggle with my asthma mentally it has been really good with little bits of things filtering through. It is hard not to get down when every breath feels like you are breathing through a tight straw with a close peg on your nose but people taking the time to thank you for what you do means so much.

There is a lot coming up in the next few months conference calls, cross party group meetings at the Scottish Parliament, focus groups, PPI sessions and I need to write a couple of things to. So loads to keep me busy especially on these long nights where sleep is hampered by predsomnia!