Recovery- its not easy and so frustrating!!

One thing I have become very aware of is how we adapt to recovery in different ways. This last hospital admission has really highlighted that to me as recovery has been far from straight forward and a totally new experience for me- even after getting my knee operated on was easier than this.

Previously when discharged from hospital  including critical care admission I have been focused on rehabbing my lungs and getting myself back to my baseline so I can get back to work and back to doing the things (I know there will be many reading this laughing saying I run back to do all sorts before I am ready and need to take more time- my family mostly).

The physical insults on my body as a result of a severe asthma attack are normal. The dot to dot of bruises were there have been attempts at bloods being taken, injections, arterial stabs and then of course the cannulation attempts and the effects of keeping that cannula in for 10 days (7 days longer than meant to but it still worked so it was staying put) because despite the burning while the potassium, magnesium, salbutamol or aminophylline going through it still worked and you could take a decent rate of fluid going through it, but these all fade. The battle wounds disappear not long after getting home. They cause no real pain and do not last (except a few scars but you don’t notice them).

This time it feels like everything has been flipped on its head. The physical insult is still with me and will no doubt be with me for months and as many people have told me it is likely to be a painful recovery. This is a totally new experience for me. The physical insult is still visible as well. My leg is black and blue which seems to be getting better now but it is taking its sorry time. This is the only outward sign from my last admission.

To look on the positive side of having a foot which I have no feeling or sensation in, a leg that has this burning nerve pain that sears through it any time I move has meant I have been resting….ALOT. I have been confined to sitting or lying as much as possible. This has been fantastic for my lungs and post hospital lethargy. My mum commented how much my lungs have recovered from this admission but it did not escape her that i have had an enforced rest due to my leg being in such a state.

bw8hdgs8QmOQ7XqhxXyN+Q

It has really broken me not being able to just bounce back, even being able to just get back and have independence. When you are unwell in hospital it is ok to ask for help for things like getting about, up to the toilet or even help with a wash but once home these are tasks I feel I should be able to do without thinking. If I need to get something I now need to think about it:

  • what am I getting up for
  • do I have my leg brace/ splint on
  • is my stick near by
  • what else do I need to do while I am up so i can limit the pain that is induced by moving

Mentally having to think about everything you do it tiring. Small things like going for a walk are exhausting. I have to concentrate so hard paying attention to what the ground it like I am walking on, where I am putting my foot and if there is a handrail or something else to hold on to while going up or down a slope or stairs.

I know I need to be really thankful I am alive and able to be at home etc but it is so hard some days watching the world go by, friends moving up the career ladder, going on wonderful holidays, starting families and I see myself going backwards. I have less and less freedom, reliant on so many people, yet back away from so many people because who wants to be around a 33 year old who cant even look after themselves properly and do the things that every other 33 year olds do.

But I have a lot of things to be positive about and have ideas in the pipeline about how to improve my life, get myself back on track and really do some work to try and get more people to understand asthma and all that goes with it. I never thought asthma could do what it does. It is all the secondary impacts it has on your life that are not spoken about and are not known.

I need to keep finding the positive each day and go to bed knowing I have done something productive with my day even if I have not gone outside or interacted with anyone.

xvavoq1sg8521

While I breathe I hope.

Trying to a describe a pain you never imagined having.

The last few weeks have been a bit rocky to say the least. I have had a head cold for about three weeks which I thought was finally clearing but the clearing of my head cold was actually it moving south and going into my chest. I guess it was Thursday last week I really felt bad and was aware of this rattle in my chest when I was breathing and my peak flow was quite a bit lower. I was not too worried as was able to clear my chest pretty well and kept going as I had been. Had not increased my prednisilone as I really didnt think I needed to. As the week came to an end and Saturday evening came I was aware I was constantly coughing and feeling puffed out at the smallest of things. I also felt very lethargic- could be all the coughing and disturbed sleep! By Sunday my peak flow was in its boots so I thought better take action now rather than wait till Monday so I called NHS Out of Hours and was seen very promptly. We increased my steroids just a wee bit and added more antibiotics. I was hoping that this quick action was going to help me avoid anything more serious happening. By Monday I didnt feel worse but didnt feel much better so I went to work thinking I would feel better as I moved about and forgot about how I felt and I did the day was so busy it flew in and before I knew it was time to go home. This was when it all unravelled and I started to feel pain like I have never felt before.

Once home after work I thought I would have a neb and do some saline with it to make it easier to cough up the junk coming off my chest.I was finding it pretty thick and difficult to clear. I regret doing this neb as it induced a massive fit of coughing and hacking trying desperately to bring up as much off my chest as I could. It was during this that I felt a pop in my chest on the left side. The pop was followed by the most excruciating searing pain and the best way I can describe it is being shot which is odd because I have no idea what it is like to be shot but this is what I think it might be like. I was in a total state with the pain. I couldn’t change in to my PJ’s because of the pain, I couldn’t do anything and that night I can’t say I slept very much at all. I was in agony. Which makes me wonder why on Earth I thought it was a good idea to go into work on Tuesday. I have no idea, what made me or how I thought I would even manage the day. I got in and got to my office at which point I just wanted to cry. It took me so long to walk into the hospital from the car park and everything felt like it was moving in slow motion. Eventually my colleague came in and when asking if she could see my patients today it was all I could do to not cry. When I told her what was wrong I was given my marching orders and dispatched back home. I don’t even remember what I was thinking and how I even thought work was possible. I really do wonder at some of the ideas I come up with.

Before leaving the car park I called my GP and got an appointment to be seen that morning. It was a medical student carrying out the appointment with the GP supervising. I felt sorry for the student as I was not the simplest of patient for him particularly given all my allergies and all my random drug doses which are not listened or being used for something other than their indicated role! But I was sorted and given some more painkillers and went home to sleep and rest thinking that this was it and I was on the mend. Looking back I think that was wishful thinking!

Tuesday into Wednesday I hardly slept and was tossing and turning trying to find a comfortable position where there was not pressure on my chest and lungs. By the time morning came I was in agony. I thought I had felt the worst pain I could on Monday but I was wrong. Wednesday I felt I could hardly move. Every tiny breath would sear through my chest and any cough was met with a massive interjection as my body tried to stop itself from hurting even more. I had run out of all my options of what I could do to help myself so I called my GP and was put straight through. She advised I come straight up to see her and get checked over. I was so impressed with the treatment I got. I hung up the phone left to go to the GP and was taken in by the Dr waiting for me without hardly sitting down. She dispatched me off to the hospital for an X-ray and stronger painkillers which I was grabbing with both hands. I just wanted something to settle this pain. It was mortal agony. The nurse who I saw had seen me before with my asthma so knew me but said I looked awful and she had never known me to complain about pain so I must have been sore. My obs were all okish except for my heart rate at 163 and my blood pressure was sky high about 174/108 I think it was or similar. I saw the Dr and was given a variety of different painkillers at different times to build them up and see what works best.

The pain was so bad that I was given IV morphine which I really wondered if they gave me as I didnt feel any relief from it until I started seeing turtles coming out the walls and curtains trying to steal my blankets. At this point I knew the morphine was working. It was the strangest sensation and part from the eventual pain relief I would never want it again and really tried to hold off having a second dose. The pain relieving effect was good though and it meant I could cough properly without pain which was such a relief!!! I was discharged with oral morphine which I was hesitant about taking. I took a really small dose when first at home as wondered about what may come out my walls but was glad that this was not the same as the IV version and only made me a bit drowsy which is far better than seeing animals coming out the walls!!!

This was all a week ago. I thought the pain would all be easing up by now and I would not be holding my chest every time I coughed for fear of the pain that would shoot through me, but its not. It is still so sore to do anything. I ache all the time. Pain shoots through my chest with each movement. I am trying to take the least amount of pain killers possible but not taking them is proving to be the wrong decision as it is limiting what I can do everyday and also means I can’t cough.

I am so disappointed as I was feeling so good and doing so well, going for short cycles and managing some indoor wall ball and stick work at lacrosse. I hoped I could build on this but once againI just feel it is the same thing happening which happens over and over again- just as I feel well it all goes pete tong and back to square one.

I think if I am still so sore I will be seeing if I can get more painkillers on friday and see if there is something that is a bit more long lasting than the stuff I have.

Fingers crossed for yet more rest and it will all resolve and I will be back to wall ball and enjoying life again!!!!