#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.

It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.

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!

Clinic and next steps!

Yesterday I was a bag of nervous, full of fear and also there was a hint of excitement at what may come of going back to see my old consultant again. She knows me the best. I have known her my whole time since I moved back up to Edinburgh. It was a relief to see her again. She just gets me and knows what is important to me and helps me to be able to do what I want to.

What was the outcome of seeing her?

We have a plan. A plan to reduce the prednisilone and much more intensive than was before. In the past we would just reduce and see what was happened. Instead this time I have to go to pulmonary function every 2 weeks to have a FeNo test.  I will then be in email contact with my consultant to give her the result. Depending on the result we will reduce or stay on the same dose of prednisilone. This way I hope that I won’t have the dips and crashes I was having when reducing. We can see exactly what is going on and when. Fingers crossed this will prevent any attacks and I can get off the prednisilone once and for all. Its going to be a long road but hopefully one that will be worth it.

I am also going to see a psychologist to refresh my strategies for pacing myself and dealing with my asthma. I am not the best at getting the balance right between too much and too little. As a result I tend to have peaks and troughs  in my energy and ability to do things. I want to get back into the right balance of work and life.

Even though not a huge amount has happened in the appointment and no big medication changes or anything I do feel like I managed to get a lot out of it and have the reassurance of being under someone who knows me. It is almost a safety net in a way. I also know she will tell me if I am not doing enough and tell me if I do too much which is a good thing.

Hopefully this plan will be positive and have a positive outcome.