SoulKraft Wellbeing Radio Show 10.07.19

Last night I had a totally new experience. I was a guest on a radio show. I have done radio interviews before but they have never been in a radio studio with the headphones etc on so this was all a bit new and exciting! To listen to the show follow this link

safe_image

SoulKraft Wellbeing Radio Show is a weekly show hosted by Lauren on Stirling City Radio. I was put in touch with Lauren via a mutual friend but we were also at the same school. Lauren’s radio show focuses on mental wellbeing and has a sub topic each week focusing in on part of mental wellbeing such as creativity. You can read more about Lauren, her blog and radio show here.

To say I was a bit nervous would be an under statement because I have never been the best with words when speaking about my own health. I can write it and I can speak about the surrounding topics such as asthma research, new asthma medications when giving presentations but the last few times when I have spoken about myself and how my asthma has impacted me I have ended up in tears in front of a whole load of people, so I was hoping I was not going to do that while on the radio. I have also never spoken about my view on mental and physical health. I have written about how a physical health condition has impacted my mental health but never really spoken about it and also not spoken about how I view health as a whole.

It was great to be able to speak to someone who has had such similar views on health but they come from a predominantly mental health condition where my initial diagnosis was a physical which has impacted on my mental health.

Reflecting back and listening to the show has been really cathartic and in a way given me a new lease on life and advocacy. It has made me realise that health is just health wether it is physical or mental. Part of me really feels that all this attention being given to mental health may just be stigmatising it even more now. There is a lot of press given to mental health because it is chronically underfunded but why is it. Mental health conditions just like physical health conditions sometimes cannot be prevented and sometimes can be prevented, all conditions can be treated with pharma input or using other approaches there is no real difference (I get that this is being very generalistic but when you get to the nitty gritty of all conditions they are complex and hard to manage.

I want to try and spend some time promoting the impact that living with a chronic (sorry Lauren) health condition can do to you holistically. I say holistically because that focuses on the whole person not just the one organ or organs that the condition effects.

Thank you again Lauren! If you want to listen to the radio show

 

Coping with allergic reactions

I have written a lot about my allergies and how the affect me. Being allergic to salicylic acid is a nightmare. It is in everything from fruit and veg to toothpaste. I have been salicylate free for a good 10 or so years now. On days where my asthma is not too bad I can manage food that has a low level of salicylic acid in it but even then I still react a bit but just break out in hives, go bright red, itchy and get a really productive chest and upper airways. This is with 3 different anti histamines onboard, a H2 blocker and oral steroids. I hate to think what I would be like if I did not take all of that and had a reaction.

The physical impact of allergic reactions is not great and the left overs hang around for ages, the itching particularly and then the exhaustion which is not helped by the extra anti-histamines I have to take when I do have a reaction.

For me the effect an allergic reaction has on me mentally is fairly significant. For example today I had a reaction when having my lunch. I had a lovely morning down at Cramond with Ghillie followed by some formal obedience training for Ghillie. The afternoon was full with meetings at the university. I had a reaction at lunchtime which knocked me for 6. I tried to get on top of it quickly so I would be able to make it to the university for my meetings but it didn’t work. I had to cancel and bail out of them. This is the part of having an unpredictable condition that I find so hard to deal with and cant find a good way to deal with it.

My main concern that I think about is what others think. I know I shouldn’t worry about what others are thinking and today of all days I should not have worried especially as the meetings I was meant to be at were with researchers from AUKCAR who all know about allergic reactions. You see so much and hear so much about people who say they have allergies to things but they don’t, it might be an intolerance or something just doesn’t agree with them but it is not a real allergy. This worries me so much as salicylic acid is in so much and I think people must think I am a fussy eater. I also have heard so many times from people who say their friend or family has allergies but they still eat things so it gives this false sense of what an allergy actually is. I have this fear that people think I am a hypochondriac when I wont go near stuff etc.

I don’t really know what I am trying to say other than my salicylic acid allergy is really difficult for me to deal with and having to cancel things at the drop of a hat due to a reaction is so frustrating as there is nothing more I can do to keep them in check.

In this day and age I just wish people would understand what a true allergy is compared to what disagrees with them or is an intolerance etc. It seems like everyone has allergies particularly gluten just now. In restaurants every other person appears to be ordering things that are gluten free yet then tuck into the bread or when they don’t like the taste fo the gluten free option they switch and just have the normal food. If it was a real allergy you would not be doing that, you would be avoiding the food like the plague.

One day I am sure I will be able to get a better handle on things and manage them in a way that I can recover from them quickly so I am not having to cancel plans so often.

A take away I would like readers to think about is how the person who is having to cancel things feels. I never do it because I want to, I cancel because I have to.

#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.

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.

IMG_3077

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.

IMG_1483

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!