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.

Your Boss, you, occupational health and asthma!

In this blog I openly talk about my asthma and how it effects me. The highs and lows and everything in between. One thing I am not so good at though is actually talking in real life about my asthma. I can do the factual stuff…what my meds are, what my pf is, my symptoms e.g. wheezing etc but getting down to the nitty gritty and how I feel about it I always answer with one of two words. I either say “I’m fine” or “I’m okay”. According to my step mum if I answer any other way things must be bad. To me saying I feel awful is almost giving in to asthma. I am never (touch wood) really ill with anything other than my chest and it is so extreme its rubbish and hard to admit when you are otherwise pretty fit and well. Which to say I am fit and well is a bit of a stretch but if it were not for my asthma then I would be really fit and really well. Everything that is wrong is as a consequence of brittle asthma!!!

Back to the point of the post.

One thing i have learned over the past 10 years which I want to share as it is so important. As much as my asthma is pretty visible I do try to hide just how bad it is. When it comes to work or university this is not something that I should ever have done. Through my first stint at university I really tried to hide how ill I was. Despite being in and out of hospital I continued to try and play football. I tried to keep up with lectures and never applied for extra help. This was a huge mistake. By pushing myself harder and harder probably made things worse.

Second time round at university to study nursing I was more open. I went to the disability services and told them about my asthma (and dyslexia) and got the support I needed. This then lead into my career and my employer knowing about my asthma. I am not sure how open I would have been had I not had an attack at work and also had to miss some time on placement because of hospital admission. So as a student my boss to be had seen me when I was bad and knew what it was like. This was good. I didnt have to talk about it but everyone was aware.

I always thought that it would prevent me from getting a job and part of me wanted to hide it so no one would know. But I was not able to do this. Over time i have come to see that by acknowledging how bad my asthma is I will actually get the support I need and I think my employer appreciates being honest.

Working in the NHS I am always worried I will get redeployed but I have had such great support from my charge nurse, clinical nurse manager and occupational health. I think my work ethic has helped keep me working where I am but also by accepting the support that they offer has meant they can see I still want to work no matter what but that I am acknowledging that I can’t always stay where I am.

Seeing occupational health to me is such a hassle. It is a tick box exercise and just another hospital appointment I need to attend. I never like to attend hospital appointments on days I work as do get quite worked up by them. By attending the appointment I am showing I am accepting the help but also I do tell them how I am feeling and can show them how I am trying to get my health better by getting second opinions etc. This to me is important because I feel it shows them that I am not happy with the way my health is and want to do whatever I can to make it better. If I just gave up and sometimes I do feel like it, then there is no point in my employers and occupational health putting the effort to keep me in the job I love.

I think what I am trying to say is that no matter what when you have a physical condition no matter how hard you try you cannot hide it. I have had my charge nurse see me in the High Dependancy Unit fighting to breathe and try to hold a conversation. You can’t hide from it when you work in the same place that your a patient. You also never know when asthma will strike so I have learned that way not to hide it because then people know what to do and what to expect! By talking about it with the correct people you can get the support and not get left floundering trying to keep yourself at work but also have a life. This is one of the big things I was lacking. I was so focused on keeping myself well enough to work that my days off were spent in bed trying to get better to face the next day. I now work shortened days which lets me enjoy my days off and not be totally exhausted.

I will still never really admit how awful I feel sometimes as on a day to day basis people don’t need to know it. They don’t need to know about the constant pain in my chest or that my chest is so tight or that I didnt sleep a wink because I was either having a neb or up coughing. People don’t need to now that because it is part of everyday life. It would be the same thing over and over again and never really saying much positive so by saying I am fine or okay is so much easier and doesn’t invite questions that I don’t want t answer!!!

Opening up to my bosses and occupational health is a big step. I want to be able to say more easily when I am not doing great but just hate complaining. Writing here I can say exactly how I feel as others who read this will often understand as they are either in a similar situation or have an interest in asthma and want to learn how someone actually feels and what it is like to live with on a day to day basis.

Be honest about your health. You don’t need to wear a post it on your head saying your ill but tell the relevant people and get the support you need. I am sure I could have had a lot less stress and perhaps less hospital admissions if i had been more open and honest about my health all those years ago!

Back to the grind.

So I went back on placement today. I was so glad to be going back but at the same time I was really nervous about how I would cope. I have found since being discharged I am unusually tired and getting much more shortness of breath. I knew I had to go back and did a core shift so I would not be pushing myself to much. I got butterfly’s in my stomach on the way to the hospital today. I don’t know why I was nervous. Maybe because I was unsure how I would be and how others would react to me being away for two weeks, I just didn’t know. It could have been nerves due to the not knowing. Anyway it wasn’t worth the panic. It was all fine. Yes there were questions about how I was and what happened etc but they were just concerned and were making sure I was ok.

There was jokes about the bruises on my arms and the wards phelbotanist had her tourniquet round my arm feeling my veins as she didn’t believe I had so many bruises from bloods and venflons attempts!!!! What is it with them that they all think they can bleed anyone!!!!

I was glad I only did a core shift. By the time I got home I was really struggling. I had to stop and neb in the car on the way home as I was so wheezy. I think I have used a whole inhaler today. Well I exaggerate. It felt like I was using a whole inhaler!!! I did my pf when I got home and it dropped to 210 but luckily after a back to back neb it picked up to 300. I am meant to be tapering down my prednisilone tomorrow but I am not sure I am going to. I am not on placement over the weekend so might do it then and stay on the high dose for another day. it is not ideal but I am kind of of the opinion now that I have been on it at such a high dose for so long that I am not sure it is actually going to do much more damage to me if I stay an extra day. Obviously I want to come off it but at the same time I think now I would rather stay on it and actually be able to breathe and feel semi normal during the days.

I see my consultant on Monday and need to make sure I go through what has happened with him and how I feel about it all. I am very good at not actually telling him the whole story which really doesn’t help matters but I hate going to hospital appointments and just want them over and done with.

So the things I need to ask him about are:

  • getting a DEXA scan- the pharmacist when I was in said I really need another one as it has been a while
  • the theophylline tablets and see what he thinks of them
  • the pain I have been getting in my chest recently- i feel like my chest is always bruised and it sometimes extends into my shoulders and arms.
  • why my attacks seem to take so long to come under control as i cant afford this much time off for every attack
  • my weight and what I can do to keep it up without eating enough for a small army at each meal!!!

that’s it all I think. I am back on placement tomorrow then have the weekend off. I really want to play some golf so i hope the weather is good and I hope the lungs are co-operative so I can go and play. If not I will be grumpy!!!!