Feel like that duck you see calmly swimming in the pond but take a look under the water and his feet are paddling furiously just to keep a float.
Chest wise I feel that I am managing to keep the outside world seeing me as ok but when I leave work and get back home I just collapse into a heap and the outside shell comes off to reveal total exhaustion, pain, fear and the fight for breath. More and more now I can’t keep up this persona of all being ok. More and more people say to me I look tired, i sound awful, should I be at work. The reality is that perhaps somedays I shouldn’t be in work. But I love my work, my work gives me a purpose, its gives me something to do with my day which otherwise would be spent moving from bed to sofa to a stroll outside to perhaps the sofa again. It would not be the life for me which is why I push and fight a daily battle to get up, get dressed, have my meds and put on that face that can take on the world.
It is a difficult one because I know my colleagues all care for me (mostly) and don’t want to see me suffer, and if Im not well I should be at home. But my mentality is that if I call in sick I am not failing but adapting to a life I really don’t want. Fighting to stay well, have a job and live a life I have earned keeps me going. If I stopped this I would give up. There would be nothing to drive me on to get that health and wellness I really want.
In my job I can relate to my patients. I can understand the frustrations of waiting for Dr’s, or getting the wrong prescription, being told you can’t go on holiday, getting the news you need to start a life changing and life altering treatment, having to accept you now have a tube coming out of you or a great big blood vessel created- I can understand these fears, frustrations, anxieties that they go through. Even the little things like holidays, working, friends, altering a diet. I have experience of this. I can share my experiences of dealing with these things and how to navigate the world of hospitals, Drs, nurses and all the other allied health professionals you see. This is why I love my job. I can help my patients adapt to living with a chronic illness and appreciate their frustrations at having their illness forced upon them through no fault of their own.
As my health has got worse recently I don’t work as long as I once did but there are times that working the hours I work it is not possible to do everything I need to do in the time allocated. So what do I do?? I don’t go home when I should. I stay until the job is done. This happened tonight and I suffered from it. I stayed late went to pick my bag up from my office which had been sprayed with some god awful deodorant or perfume. I had quite a bad asthma attack which I got control of and got help and I am getting back on the right track. Many ask why I stayed, I should have left and the person whose patients they are should have dealt with them. I knew this wouldnt happen so I wanted to stay and make sure they had everything they needed and would receive the correct treatment etc.
Why did I do this??
I had a community matron when I lived down in England who went above and beyond the call of duty. I was on a rather complex regime of stuff including a sub cut syringe driver of terbutaline. Like PD sub cut drivers for anything other than palliative care are rarely seen so most of the staff don’t take an interest and the patient suffers. This happened to me. I didnt get y 24/7 driver renewed, ran out and ended up becoming quite unwell and going to HDU. For several admissions after that my community matron would come to the hospital if she knew I was being admitted (she normally did as she was the one sending me in) and have all the stuff there for me with a plan. This meant I didnt suffer. I got the treatment I needed and often this meant I would be in hospital a shorter time than had I not had my treatment.
So I guess that from the experience I had with my community matron it has stuck with me. She inspires me to be the nurse I am. If I can be half as good as her it would be fantastic. Even if at times I thought she nagged the hell out of me, often wanted to slam the phone down on her, not answer the door bell because I knew there was something she was going to tell me to do or some appointment she wanted me to go to or the worst being she would admit me to hospital. But she did all this because she cared and wanted the best for her patients. I didnt see it always at the time but after a few days and feeling better I would get that “told you so look” from her- I could never win!!!
Having this experience is why I do the things I do. I want the best for my patients. I am lucky that I still have this reciprocated by my medical team who want the best for me.
If I get through the day doing all this then I can flop once home. I can sit down and concentrate on myself. Trying to look forward and plan for the days when I won’t be this duck paddling frantically under water will be great but being able to live just now as I am is getting me through the day. Only those close to me see the real fight that goes on and even then they don’t see the half of it. One day things will be different but for now it is one day as it comes. Over coming obstacles no matter how big or how small.
The only slight good thing about today is that I have a real reason and trigger which caused an asthma attack. Normally Im never really sure what has been the definite thing to cause an attack as there is so many things ranging from dust, pollen or food. Today I can nail it. It was that horrendous perfume or body spray or whatever. It may not seem like a positive but you need to find positives in all situations and this was it. I identified the trigger. May need to wander around with a mask on in future to avoid any toxic smells again!!!
This is my night. Some nebs and fingers crossed some sleep!