It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.

Sick leave- what do you do??

Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months).

Often people say to me they would love to be off for as long as I have been off and it must have been nice. I hate saying its not and Im glad to be back but it is the truth. I hate being off as I do love my job. I think when you are at work and having a really hard, difficult day the idea of being off is just great, and then when you have had a week of annual leave that has gone by in just a flash you long for more time off to have a good recharge so when someone is off for a extended time you think it would be bliss but to me it is far from that.

Time stands still, it feels like it moves backwards, hours drag and minutes feel like hours. It is ok when I am in hospital and unwell because you feel so awful- time stands still in a different manner, you want time to speed up so you will be out the attack and find it easier to breathe but it doesn’t speed up, again it takes forever but once out the initial terrifying difficulty to breathe has passed you are left feeling exhausted and time just passes as you dose on and off requiring medication in-between but time just passes in a haze so you really have no idea about time or what day it is. This bit is ok as you really do feel ill and just curl up.

With asthma the tricky bit is when you feel better but you feel better when doing nothing and I mean doing nothing. Lying on a bed you are totally fine, breathing is good, heart rate is comfy, pain is at a low and all seems ok with the world until you need the toilet, shower, something to drink and thats it. Your lungs tighten up, heart rate sky rockets and pain rips through your lungs and you think to yourself all you did was stand up and take a few steps but feel like you have just run a marathon. This is when time is at an ultimate go slow. There is only so much lying on your bed or sitting on the sofa you can do. There is only so much day time TV or on demand TV and films you can watch.

They say rest is good for you, enforced rest is even better for you but even harder especially when you know that any movement you do will cause you to feel pain and go backwards. It is frustrating and difficult. Many of my friends with asthma and other lung diseases know exactly what it is like and share my frustrations. For me it makes getting back to work difficult because doing nothing you feel invincible but when do you know that you are ok to go back to work?? It is a hard call and loving work means you want to go back as soon as possible.

I find my self very fortunate as I have my patient and public involvement stuff which I can occupy myself with when having to be inactive and resting. It keeps my brain really active and i feel like I am doing something good with my down time. It is important and it stops me dwelling on what I imagine I should be doing. I would torment myself otherwise. Also writing this blog and the various support groups I am in helps me through it all but I know others don’t have that which is why I am so passionate about PPI because of the impact it has had on me. I am sure I would have long given up the prospect of even returning to work or do anything had I not had a such positive experience being involved in research. It has made the time that stands still move on and passes and soon it is the day to return to work.

How do I know when I am ready to go back to work properly and actually ready rather than my brain is super bored and I need to do something? This time it has taken me longer to go back to work which Im not ecstatic about however over the past week I have noticed how many people say how much better I am looking and how my breathing appears and sounds. This is the first time in a very long time that people have said positive things about how I look or appear compared with how I look like death warmed up and sound like I have swallowed a whistle. It think this is down to a combination of things, 1 having a better steroid regime which is preventing the dip I kept having late on in the day, 2 switching medical team to a new consultant, asthma nurse etc and having confidence in this team and knowing that things are getting looked into compared to before, and lastly I have been off longer but then I was kept longer in hospital and was reliant on less nebulisers when I was discharged than when I am admitted to the Royal and get discharged often before I can even walk the length of the room and often just bounce back in meaning I am not great and more stress on my body. So there is a number of different factors this time that have changed.

The last few days have been a great test for me to see how I really am doing. Going in to work to help with registrar peritoneal dialysis teaching which I really enjoyed and felt like I was useful. I must say I do love teaching but not just the teaching about something but instilling in the teaching and training how important the patient is and not just to get them better but respecting their choice and understanding what is important to them. I feel in renal this sometimes can be over looked especially when a patient chooses peritoneal dialysis as the work up can be longer and if they suddenly decline and require dialysis without a second thought a temporary line is stuck in them and then thats them on haemodialysis.

Today was also another great check to see how the lungs were doing. I attended a collider to discuss ‘Decision Support for Asthma’ which was industry partners, researchers, clinicians as well as patients to brain storm ways to help those with asthma. It was a fascinating meeting and what was clear was the passion of all those that attended to help people with asthma. Ideas were not the same in the groups but the patient and patient choice was at the centre. As a patient it was great to share what is useful and what is not useful to living with asthma. I will write a different post about this as I hope it will have positive outcomes and lead to new innovations.  I was tired by the end of the day but a good tired and not too chesty either despite the really hot weather and humidity (which I think will only get worse as the weekend goes on!!).

 

So fingers crossed when I see the GP on Wednesday she gives me the thumbs up to go back to work and some normality can return to my life!!!

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!!!!