Its ok to cry

I hate crying. In fact Im not sure anyone would say they like to cry. It is an emotion relating to sadness and distress so one we never want to experience if possible (There is the odd occasion that laughter renders us crying in which case it’s not so bad).

I am not much of a crier and it takes a lot to make me cry. Giving up my job really left me pretty low but I didnt ever cry about it. I was upset and close to tears but never actually cried. I am the same in clinic appointments I get upset but never shed a tear.

The few last weeks I have found really tough. I have cried a lot which is when I realised just how tough I was finding dealing with my health just now. The first time I cried was with my physio when she said that the feeling probably wouldn’t come back in my leg but the work we did would help my knee to compensate and it would learn to feel what my foot is not. Things like walking will be easier as my knee learns to recognise the impact when walking etc. I just couldn’t help but cry.

My leg has been the cause for me crying more in the recent weeks than anything else has. I was speaking to my mum briefly about stuff and she has been helping me apply for ESA too. I almost ended up in tears and after she left I ended up in a lot of tears. For years I have dealt with my asthma and it has upset me but not left me in the turmoil that my leg has. I know more about asthma that most of the professionals do, what I don’t know about asthma is probably not worth knowing, but my leg I have no clue what is going on and no one can give me an answer about what is wrong with it or how long it will go on for. All anyone has said is that the feeling most likely will not come back as there has been no improvement in sensation so far.

I am trying to stay positive about it and also trying to learn to adapt and be as independent as possible. I don’t want to sit and wait for this one day to suddenly get better which would be great but if it doesn’t get better then at least I am able to be ok for myself and make the most out of my physio sessions.

What I wish I could do is to let my emotions out more. I felt a sense of relief after crying and letting it all out. I always thought this blog was my way of coping and making sense of everything that goes on with my health. I have some posts which I write that are kept secret which I want to be just for me so I can get it out but not for the public. The posts are not really constructive and more a jumble of my thoughts- or a more jumbled version of my thoughts.

Particularly in the UK we like to have that stiff upper lip and not show our emotions but this is not good for us. We need to show emotion otherwise we eat ourself up inside. It is not weakness so shed a tear. Particularly when we are living with chronic illness that in turn causes other conditions it is hard work. Life without illness is hard work, illness just adds to that work and it is work we cant leave in the office. It comes with us everyday, every night there is no relenting.

It is ok to cry wether it is publicly or privately you are not weak for crying. It can be cathartic and actually help unload some of the stress we feel which in turn can potentially mean our conditions can become easier to manage especially if stress if a trigger to cause conditions to flare up.

 

The Intensive Care Unit

I have written often about being admitted to intensive care or the high dependancy unit or being reviewed by critical care staff and it always something I have just sort of dealt with and not thought to much more about it. That was until last night. I couldn’t sleep for tossing and turning thinking about how many times I have been in ICU or HDU or had the threat of going there.

Why all of a sudden has it bothered me??

Yesterday was the first meeting of the Critical Care Patient and Public Involvement Group (which I will write more about in a post of its own). A room full of patients who have been in ICU or their relatives, Drs and Nurses from ICU and then researchers whose area is critical care.

Naturally when you have a group of patients together you are naturally going to ask how you are linked with the group and I guess what your story is. In the discussion part of it there were 2 other patients who spoke of their experience being in ICU and how it was awful, the worst time of their life and how the Drs and nurses saved their life because their life was in their hands. It was a traumatic experience for them and they have got through it. I heard the saying “surviving ICU” a lot.

“Surviving ICU” was what bothered me and kept me awake. I think maybe I under estimate how bad my asthma is or maybe how sick I get or how dependent on medical staff I am to get me better. I know that my asthma is severe and I know there are many more hospital admissions, HDU admissions or ITU admissions ahead of me and I think i sort of accepted this maybe. It was not until that group discussion that I realised just how traumatic it is, life threatening it is, and how it is not run of the mill to go in and out of critical care. At the time I was able to keep my emotions in check but when I got home and set up my nebulisers that it really hit me. The other people in the group had a one off experience, this is what ICU is meant to be like ideally a never experience but if it is going to happen then once is more than enough not once or twice a year sometimes more.

In my working life you hear about people going to intensive care, its not looking good for them or statements that you mainly go out ICU horizontally not vertically. I think for me I have always come out of ICU so would never dwell on the experience of being admitted. I cant say it is a pleasant experience not being able to breath and having the most toxic drugs that make you feel horrendous to make you better but it gets better, I go to the resp ward recover and get back home. It is how it goes and has been for the last 14 odd years.

So after that meeting and hearing others speak about ICU it has almost given me a fear. In the back of my mind I know there are only so many times you go to intensive care or high dependancy and get out but so far I always get out and sometimes bounce back but then get out again. I think it is the emotions that I could see on the other patients faces when they recalled their experiences that it hit me that maybe I don’t have the right emotion to it. The fear they had and the gratitude to the Drs for saving their life was clear to see. Its not that I don’t appreciate what the Drs do but I guess I just never wanted to admit that Im going to intensive care because its the safest place and I might just be that unwell that action needs to happen quickly. Every attack I have I am terrified that it might kill me and that asthma may just win the battle and Im sure I have surpassed that thought as it is very over dramatic and im young so it won’t happen but seeing younger patients have that fear of death and the unknown.

I have never really expressed my fears of my asthma to those close to me. I try to give the outward opinion that its fine, its life, its been long enough now I should be used to it. I would like to be able to have a conversation with people about asthma and death but would worry they think I am just being over dramatic and its never going to happen. Maybe I should though as a comment  that occurred really hit me and made me think about how those close to me feel and thought about my asthma and health. Recently a very close friend died, my mum was away, I was home but she read a text out loud and said “oh my god she’s died”. My step dad thought it was me that had died not the friend. This really hit me that if they hear something about someone dying they go to me and think it is me. I try so hard to keep well and take my medications etc but its still not good enough. I always knew they worried about me doing to hospital but never thought about the dying aspect of it.

What I find so difficult and I think it includes the whole critical care thing is that in the past I have been rogue with managing my asthma. I was young and didnt understand it and didnt want to accept it so I would increase medication so I could do something only to crash and burn and end up in hospital. That changed after a consultant had a go at me (they were just stern and didnt mess about but i felt awful so took it worse than had I been well) which I well and truly deserved but I stopped messing about and accepted not being well and accepted what I could and couldn’t do. The point I found so hard was that despite this change in behaviour and management I was still ending up in ICU or HDU but not having the good bit beforehand which I had before. To this day I still really cant accept the ICU or HDU admission for nothing. I get it if I was to go and play a game of football have a bad asthma attack and need critical care- I deserved it, I did something my body cant handle but now I try my best and still end up going there and that is the hard bit. Where before if I hadn’t been doing anything attacks would mean hospital and a respiratory ward where now it is resus, critical care and then respiratory ward. With this development what happens when it gets worse……

Lots to think about.

Craigmillar Park Charity Golf Day 14th August

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On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

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For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

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The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

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I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

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(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

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I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

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Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.