Life is all over the place at the minute. I have had a wonderful few days with friends but at the same time there are things going one which are bothering me I keep pushing them to the back of my mind but they keep popping forward. I am becoming increasingly unhappy in my job but, yet I lack the self confidence to look for another one. Rather, I lack the confidence to believe in my ability to get another job and so I fail to really make an effort in looking so far 3 potential jobs have passed me by. I have a very dear and close friend who is going through a terribly tough time at the minute and I feel helpless to help her, and I feel I am letting her down greatly and failing to support her fully.
There is also the issue of my health. I am somewhat reluctant to blog this lest it makes me sound like a self centred whinge with a massive chip on my shoulder, ungrateful for what I have got in comparison to others.
My asthma is fairly severe, it is also difficult, unstable and presents in a way that effects only a small number of asthmatics. In the words of my consultant, it is feisty and it presentation leads to a distressing level of breathlessness. For a long time I have lived with this, it has become normal to go out with two salbultamol inhalers, spacer steroids, nebuliser, spare batteries, salbutamol, atrovent and saline nebules in my bag along with the painkillers I also carry. It has become normal for my heart to sink at the sight of a warm day on the horizon, it has become normal to cough, wheeze and be breathless, it has become normal to fear the winter and the chest infections it brings, it has become normal to need to seek emergency care thtough out the year and need 4-6 courses of steroids each year and having to cancel much looked forward to events because I am too unwell, and it is normal to take tablets, inhalers and nebulisers throughout my day. The GPs receptionist has learnt that it is me when I ring by the sound of my voice. Yet none of this should be normal for a 36 year old. I live with it because I have to, recently I was at my local garden centre eating ice cream and nebbing, people walked past and stared. My immediate thought was "whats up have they never seen someone on a nebuliser before?" No, of course they haven't because its not normal. I don't want to be seen to seen wallowing in self pity or selfish but this is my life.
For years I have held out the hope for some miracle drug or for my asthma to settle, in fact it seems to of done the slight opposite and got slightly more unstable over the years. I kinda knew that this was probably was as good as I was going to get, particularly after my conversation with my chest consultant in January but I didn't want to admit to myself.
In May I saw my chest consultant, my lung function had fell a little, nothing major. He then asked how things are going. I told him, his response was along the lines of well the impact your asthma is having on your life is not acceptable but there is nothing more we can offer you. Its hard to put into words the impact had, to say that my quality of life is not acceptable brings home to me the fact that much that I have come to view as normal is in fact abnormal. I do have what I would term as a relatively good quality of life but I know that without my asthma and other health issues it could be better.
The worse bit to hear was this is as good as its going to get, because it made me sit back and take stock of how my life is. I kind of knew this anyway but didn't want to accept it but, to hear it said brings it home to me and the reality. Its scary to think that at 36 I face a lifetime of nebulisers, chest infections, being unwell, emergency hospital admissions and being different. I don't want this to be my life but I have to get my head round it. Yet I don't want to get my head round it because to do so means to accept my situation as it is and I don't want to accept it, I am scared right now. Its all confused and complex. And horrible. And I feel selfish feeling and thinking this way. He decided to try me on another drug, montelukast in the hope it may help a little but miracles are not expected. I think it may of helped slightly though the last two days it had been grumbling a bit.
My consultant then informed me that because his case load is getting bigger and the fact that there is nothing more he can offer me medically and I am not at high risk of dying from my asthma he is going to discharge me from his care. It felt like the final little bit of hope had been extinguished, that even my consultant had given up. Maybe I am overreacting I don't know.
I went to see my asthma nurse a few days later and she greeted me with, I know that there is nothing more we can do for you but we still need to see you yearly in clinic. Err thanks!! The trouble is everyone seems to focus on me being an illness, a pair of crap lungs but I am not I am a person and I wish those delivering the news would recognise this fact. I am a person, with a life, with friends and family. Don't just drop the bombshell, stop, think and regocnise the impact and do something that recognises me as a person. There have been very few people who have cared for me over the years that have reconised this fact. Its rarely how are you, how are you coping? More how is the asthma? I am more than that. I am me, please look closer!
((((((((((hugs))))))))))) It's awful when you're presented with a bomb-shell like this, but it's certainly not selfish to feel as you are and to have been knocked side-ways by the news. I'm also shocked that you've been discharged by your consultant, when he should, in my opinion, be keeping an eye on you because of the severity of your asthma. Maybe you could write to him and tell him how you feel about him having 'dropped' you, especially after such a bomb-shell of not being able to do anything more for you. My consultant can't do anything more for me either, as you know, but because of this he sees me every couple of months in clinic (and more regularly than that on the ward in admissions). Might be worth putting something in writing, just so he knows where you're at and how you feel...
ReplyDeleteAs for feeling like you're just a pair of lungs, not a person, that's something I can relate to as well. I'm lucky with my care team that they all take a very holistic approach, but there have been many in the past, and some acquaintances, who have definitely made me feel as you sometimes do. We are not just diseased lungs. We are whole people. You're a wonderful person, and you'll never just be a pair of crappy lungs or other health problems to me.