Today Marks World Mental Health Day. A bit of a taboo subject to many, even I myself find it hard to admit that my mental health is not what it should be or where it should be, partly due to the chemical concoction of roughly 38 tablets I take each day (one of which is for mental health) which have nasty side effects leading to depression anxiety and other experiences.
For me I never thought (or more rightly chose to admit) that I had any issues with my mental health. It was only in the last 10 years when I have been forced to confront the true reality of my physical health was I in turn forced to look at my mental health.
On my return back to Scotland from England my respiratory consultant said I had to learn to deal with my asthma and learn that I was not invincible and did need to admit that I was ill. I prefer to bury my head in the sand so if I am not thinking about it then it’s not happening but he forced me to address this. I was then sent to see the Cystic Fibrosis psychologist attached to his service to get some help. It was helpful but looking back I wish I took more of our sessions on board and really used them. I went to them because I was told to go rather than me seeing a need for it. The only good thing I took from those sessions were learning how to pace myself- something many would say I still cant do.
But now older and maybe wiser I am glad I have the opportunity to spend time with a psychologist to discuss various aspects of life and really acknowledge my mental health and what my physical health has done to it.
In the area I live we have what is called The Anticipatory Care Planning Team (I first got this letter and thought I was planning what would happen should I have an event that leaves me in a situation where I cannot make the decisions for myself). No, I was wrong. This is a service for people who need to use the health services regularly to manage their condition and make hospital admissions easier. This has in itself made a huge difference and made my experience of hospital a lot smoother and now don’t fear going to intensive care quite as much as I once did. Once this plan had been established I continued going to these appointments and have found it so helpful.
The appointments have allowed me time to explore the various different parts of my life and how it has influenced my decision making and the decisions I have been forced to make. I have always been a bit of a pressure cooker. I hate talking about how I feel, I hate being upset infront of people, I hate showing any weakness. The only weakness I think I would ever show is my slight potential for being a hot head- on the football pitch with the odd slide tackle (which reminds me of a photo from Winchester days and a hot head moment and team mate coming over to sort it out while I protested I didnt do anything!!),
the other time would be on the golf course and a bad shot followed by hitting the tee out the ground, talking to myself and several vicious swings to get the frustration out!! The only other time would be when I had so much pent up frustration and Iw oddly lash out and inch something- often not soft and now I have to live with the knuckles in disrepair. Apart from this I would burrow myself to myself and clam up. Something I also do when I do not want to admit when I am not well.
Exploring these behaviours further and with the help of the psychologist we identified that what I was actually suffering with was grief. I was grieving the life I had and had now lost but was trying to very hard to cling on to. It took a long time to really understand how I could be grieving what I had not lost as I still had my life but it was just a different life from before however the psychologist brought me back to think about what I really want in life. In all honesty I still want to be that ski instructor in the rockies if I could. He had said that because I still held that dream which realistically would never happen but had not dealt with this being taken out of my control, essentially I was grieving this want but sub consciously.
(This photo was taken about 12 hours before life changed forever)
I always say and I truly mean that having the severe asthma and the life experiences it has given me has resulted in some of the worst times but also some of the best times but that does not mean I am glad to have had it. This is the part I struggle with. I would never have dreamt of speaking at conferences, being a published writer, featuring in a book, being asked to speak at events but I find because I say I enjoy them and glad I have had the chance to do this does this mean I am glad that I have had all the asthma attacks, and scary moments to be able to achieve such things. Of course I wouldn’t but I guess its a way of accepting the good in the bad.
If the asthma and all it has given me and all it has taken away from me was not enough to deal with then there is the medication I depend on. That is steroids and being on them continuously for almost a decade now has meant I have had just about every side effect that comes with them including the depression, feeling out of control, and just not knowing what to do with myself. This is one of the hardest parts to deal with. I just never know how I am going to feel and what it will be that is enough to just make me feel in the depths of despair. I cannot explain what it is like but those who have been on long term steroids or even a short course of oral steroids will know exactly what it is like. It cannot be explained in any rational way.
I hate to use the word grief but it is the only word I can think of to describe how I feel. I think I have got my head round what asthma has stopped me doing. I have fought through so many attacks where to be honest I just wanted to give up. The prospect of going to ICU which brought relief as you know they would look after you no matter what happens and you would be in safe hands when you just can not keep going. Fighting to keep independence when your family just want you near them and next to them so nothing can happen to you, keeping your job and working to the best of your ability to ensure you have something to do with your days and trying to keep active to give you just a taste of the life you once loved. This is all the things I myself fought to do. I took all my medications as needed, I may not have always made the right decisions like going to work when I was too wheezy, or pushing through when I didnt feel great, going to London to give talks and continue working altogether but I trusted my ability to do these things because my medical team were doing what was best for me and I thought they would have had my best interests when dealing with my care and adjusting my medications. I know no Dr would work in a manner to deliberately provide poor care but right now that is a feeling that keeps coming in to my head and it is tormenting me. Last April I had a horrendous admission to hospital and it really pushed me to breaking point, this resulted in me moving all my care away from one hospital to another. A big gamble but one I had to do as I was fed up or not getting anywhere and more life was being taken away- my major fear was the prospect of not being able to work. So moving care has turned out to be a good decision but it has left me with the really almost angry feeling. I cannot get over the fact that I am now under the care of someone who listens to me and has trailed me on a treatment that I have been asking for since it was released. He also acknowledged while being on a higher dose of oral steroid is not ideal it was needed for the time being to give me the quality of life I have not had. This is all great and I cant thank him enough but that being said I feel like I have wasted the last 6 years with my previous consultant going round and round in circles and not getting anywhere other than racking up the hospital admissions, intensive care visits and losing the will to live. I cant help but think what life could have been like had I made this change earlier, or had my care been different. Where could I be now. Could I still be working full time and have job prospects to look forward to, could I still be physically fit, all the what ifs in the world.
Living with a long term condition is so complex making mental health a large component wether it be due to medication you take or the complexity of living life and balancing being unwell, not able to be a “normal” person and living life. I wish I could talk more openly about how I really feel about my asthma and things but it is hard to talk about when you cant even process it all yourself because it is so complex!!!