I stupidly seem to say the same thing at the start of every new year “Well surely this year can’t be as bad as last year”, and here we are almost a week into the new year and I already realise how stupid (or naive) that statement was.
I struggled my way through Christmas and I even managed a couple of days at work between Christmas and New Year but it wasn’t easy, I developed yet another chest infection (fortunately I had my emergency pack of antibiotics), my chest is continuously tight, I cant stop coughing and to be perfectly honest I have given up even trying to sleep. Don’t get me wrong, I have felt worse, the problem for me though is that I never seem to feel good, one of my favourite sayings is “enjoy the good days and survive the bad”, I seem to be having nothing but bad days, not to the extreme that I have had previously but my good days aren’t that good and the bad days though not quite as severe are beginning to take their toll purely due to their frequency.
I was desperate to get to Blackburn the Saturday after Christmas to see an important game for Scunthorpe United but once again my health prevented it. Over the last year or so I have struggled to get to any distance away games as I find the days too long and physically demanding, however Blackburn isn’t far away and it was an important top of the table clash, I would usually expect to make that game but my lungs made it impossible.
I was then invited to a friends house for a party on New Years Eve, I wasn’t particularly well and knew that I wouldn’t be able to stay long but I decided to go. I went in my car, drank soft drinks and only stayed for a couple of hours before my lungs decided to start playing up. By 10.30pm I was at home and ticked up in bed, a great way to see (or not see) in the new year.
The weather isn’t helping me either, one minute it is mild the next it is sub zero, we have had strong winds, we have had heavy rain, it is just so up and down. My Sats aren’t great, my SP02 and peak flow readings are below what they should be, the steroids are causing a few problems with my blood sugar levels, I have 2 black eyes and suffering from a lot of nosebleeds (both are side effects of the meds that I am on). I look a mess and I feel even worse!
It was a 50 / 50 call whether I went into work on Wednesday and to be honest I possibly made the wrong decision, at 6.30am I was sat in my car at a wind swept Doncaster services struggling to breathe and having to use my nebuliser. After pulling myself round a little bit decided to continue on to work as it was near and quicker than returning home. I restricted myself to office based duties for the day and I just about managed. I still wasn’t great though and did go home a little bit earlier than usual but whether the change of air from leaving a warm office, to walking to my car in the cold and windy weather to sitting in a warm car for a hour, to having to walk from my car to my house and then another change in temperature upon entering the house I’m not sure but as soon as I got home my lungs went splat again, fortunately the nebuliser offered some relief. I then struggled through Thursday, I managed to get to work to but was completely out of sorts, so much so that I decided not to go in on Friday. I spent Friday at home, I never left the house, the nebuliser got some hammer, my steroid dose is still higher than what I would like. My chest is still tight, I am still coughing, I am completely shattered, both due a lack of sleep and due to the effort it is taking just to breathe.
If I am sat doing nothing I can just about cope but as soon as I do anything physical, whether it is walking about the house it begins to take its toll and I quickly become short of breath. I am finding it hard to juggle my life and balance things right, that level of not doing too much and actually doing nothing at all is not easy. It would be very easy to stay off work and not even try, I am becoming more and more frustrated and disillusioned with everything. I don’t see any light at the end of the tunnel. I’m not sure that to do, life appears to be nothing more than surviving and getting by. I don’t want every day to be a struggle, I want some kind of normal life. I try to stay positive, I am still managing to avoid another hospital admission, I have felt worse and I am still healthier than others.
I have tried to make an appointment to see my consultant but at the moment she is unable to see me as the the directive given is to cancel all of her appointments and not make any more until further notice. This is due to the pressure on the NHS this winter. I was told to try and cope the best way that I can and if things become too bad I should go to A&E ( I was also told I could expect at least a 12 hour wait if I attended A&E and little chance of a bed on the respiratory ward). I know that my consultant will make me an appointment to see her as soon as is allowed / possible but until then I will have to struggle on by myself.
Not an ideal start to the year.
Sorry for another depressing rant and moan but thanks for reading.