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!!!

Returning to work in a fog of smoke.

I have been back at work now on a phased return and it is going fairly well except for one part. When my chest feels tight I do find it a bit of a struggle to get from the car park to the hospital. The staff car park is the furthest out from the hospital and includes crossing the road that circles the hospital. It is not to far only about 400m probably but when your chest is tight it feels like a marathon.

To compound this staff seem incapable of waiting until they are either in their car or off the hospital site before they light up they cigarette and go on their way. I see them walking out the hospital cigarette and lighter in hand before they are even out the building- it is almost like you can see them itching to light it which they do as soon as they are out the building. It appears that they cannot survive without their nicotine that they don’t have a care for who is around them all they are focused on is lighting up and getting their fix not worrying about the effect they have on others as long as their cravings are satisfied.

I guess I am more sensitive to triggers now than I ever was before because of the attacks I have had since the start of the year- they terrified me and still haunt me. My lungs are still twitchy so any trigger will make me feel tight and wheezy. When I was off sick I longed to go back to work to have a purpose to the day and get back to the job I love but how can I do the job I love when getting into work I can only describe as running the gauntlet not knowing what I am going to have to go through just to get from my car and into safety of the hospital. This really hit me yesterday when I had 3 people in front of me smoking as I left the hospital to get to my car. I had to wait outside in the cold until they had moved far enough away that their smoke had dissipated and was no longer a threat. To me smoke is as much of a threat as a dangerous patient if not worse. You can’t call security for help from someone smoking but you can for a dangerous patient. I don’t mean to trivialise a dangerous patient but to me right now smoke is more of a danger to me than anything else. I don’t want an attack triggered- the fear of another asthma attack like I had grips me so hard I can’t shake it off.

I know you can’t go around dictating what people do but what I have huge difficulties with is that the hospital is meant to be a no smoking zone and there are signs everywhere which are just disregarded and no notice is taken of them. Many of the people I see out smoking are nurses. The same caring compassionate profession that I am in yet they really don’t actually care for those around them. There is nothing worse than being a patient and having a nurse come off their break smelling of smoke and you are sitting in a respiratory ward and could quite easily be set off just by the smoke that is lingering in their hair or on their clothes.

I think my issue that I have trouble accepting is that I did not choose to have my lungs like this. I am trying to do all I can to stay well and achieve what I want to do but I see all these people who choose to smoke and are choosing to do damage to their lungs and other peoples lungs. I do remember once I was subject to one persons smoke which caused me to have an asthma attack and go to hospital- the nurse’s smoke that caused the asthma attack was the nurse who ended up looking after me. I found this really hard.

I have rambled a little bit here but I am just so frustrated that by trying to work and get to work I am risking my own health to get inside the building. I have asked to move carpark to one that is closer so that the gauntlet I have to run is shorter and therefore the potential risk is much less but this is yet to happen and Im not sure if it will happen. It is a very small request but it does make me think what is the point of pushing myself to work when those around don’t want to try and help. To put it bluntly if those who smoke think about those around them and perhaps smoke only where they are meant to they would not effect other people, they would reduce the number of people who end up in hospital and therefore reduce their work load making their life easier.

This is a little bit off the deep end but its how I feel.

Feel like that duck…

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!!!IMG_2619

 

This is my night. Some nebs and fingers crossed some sleep!

What happens when there is nothing else?

During my last hospital admission I was very apprehensive about seeing my old consultant. I had recently changed consultant out of frustration and fear of losing my job. Just reducing prednisilone and seeing how I go was not working for me when all I wanted was to get better.

My current consultant is now based in another hospital in the City. The hospital I was admitted to was where my old consultant was based. Luck would have it that I was put under my old con too!!! I was really nervous about seeing her. I had not left things in a good way and didnt really say to her why I had left. I have told the nurses etc on the ward but not the consultant.

Ward round came and my old con was there in the team reviewing me. She was really nice and I asked to speak to her without the rest of the team. We had a good chat about a variety of things. I ended up in tears. We had a chat about why I found a different consultant and it helped us both. I explained I couldn’t keep going with the reducing prednisilone and seeing how I would go as I was missing to much work and ending up in hospital too much. It was taking too big a toll on me.

I asked if there was anything I could do to stop these attacks getting so bad. Part of me really wanted her to say yes there was something I could do so then I had the hope of changing something to make myself better but she said no. She said I was doing everything I could to manage my condition the best I could. This has left me feeling really deflated. As she said it she gave me a hug. I don’t want my life to be like this. Its like being on a knife edge never knowing which way Im going to go.

One good thing that has come out of it is that she is going to take my case to a big respiratory meeting where a whole host of asthma specialists get together to discuss difficult cases. I hope with this something will happen and someone might come up with an idea of how to make my life a bit better and have some more control of my asthma. I know I will never be free from it but just now every asthma attack lands me in hospital as I can’t control them and to be able to control them a bit better is the one wish I really want to come true.

I just need to be patient and see what comes of this meeting. Im in a quandary now as to which consultant to go with. If I’m honest I prefer my old consultant and not much has changed with this new one and she did offer me so much help so I don’t know what to do. I need to sit and think about it and see what is best for me!

It never gets easier!

Just under 2 weeks ago I had another pretty serious asthma attack which ended up with me being admitted to hospital for over a week. Over the years I have had loads of asthma attacks and all of varying degrees, different situations and surroundings yet this past one is one I am finding the most difficult to process and one I am feeling the most insecure and scared by. As far as asthma attacks go it was not the worst but not the mildest either. So what is bothering me so much?

The weeks preceding the attack I have been slowly but surly going down hill. I was having difficulty fighting off a viral infection which plagued me. Ironically when I got up to go to work the morning I ended up having an attack I actually felt better and thought I had turned a corner and was throwing off the infection. The previous day I felt awful and was debating not going into work. I felt better so I went in.

It didnt take long or much to start me sliding down the slippery slope. I had to go from inside to outside and back in again to see a patient and doing this really hit me. The change in temperature felt like fire in my chest. Walking back to my unit it felt like someone was tying a belt around my chest and not letting any air out. By the time I got back I knew I needed to go home but I didnt want to admit it. I found my charge nurse and told her. I don’t think I needed to tell her I was not well as her reaction was to take me into a treatment room for me to have a neb. I struggled to put it together but didnt want to show how much I was not managing. My charge nurse was great. She asked if I needed to go to A and E at which point I said yes. No sooner had I said yes, I was in a wheelchair and on the move to A and E. We flew through the corridors of the hospital. I don’t remember it at all really. The next thing I was there in triage having obs done. From here on everything moved so quick. I was hoisted up onto a trolley and taken through to the Resus room with a consultant and reg who looked after me. My anticipatory care plan came into its own as I didnt need to say much and all the information the Drs needed was there. I was in Resus for quite a while before I was stabilised and brought back into the main bit of A and E. The Drs were all fantastic. I needed a lot of IV medication this time. IV aminophylline was started in A and E. For me we normally wait a bit and see if lots of nebs etc can get on top of it because of the issues with my heart but the Dr’s decided to start it. I was glad as I was getting very tired and felt like I had no energy to fight anymore. I was moved through to a monitored bed in the assessment unit after that to wait to be seen by Respiratory and a bed in the Resp Ward.

The whole A and E experience was really weird for me. In fact the whole attack was. I don’t know how to feel about it. It was a number of firsts for me. It was the first A and E visit using my anticipatory care plan which worked well so thats good. This time was the first in a very long time I have ever had anyone with me in A and E. I often find it difficult to have people around me because I see how scared they can get and the fear I see in them makes me scared which ends up being a bit of a vicsious circle. I did like having someone with me. It was a comfort when getting stabbed and poked and all sorts to have someone there to distract you and take your mind off it. The other thing about this attack is that it was the first really serious attack I have had at work in front of my colleagues. I have had days where Im chesty and not great but never had a full blown asthma attack in front of any of them. They are all nurses so will have seen people with breathing difficulties but when it is your colleague it is a bit different. Part of my anxiety about this is that sometimes when I have an attack due to being short of breath and oxygen etc I can do and say stupid things (for example I once tried to squeeze through the cot sides of the bed cause I thought this was the way to get out of bed!!). You can do and say stupid things in front of family but work mates is a bit different.

I shouldn’t be surprised that it has happened. I have done pretty well to avoid any major attacks in front of them until now but it has shaken me quite a bit. This whole admission has shaken me quite a lot of a few different levels. I will post about them once I have sorted my thoughts from the rest of the admission out. I have only processed the acute phase of the attack as so much happened.

Back in the hospital

Sorry for being out of communication for the past week or so. I had to go into hospital as I had an asthma attack. I am not quite sure what caused it but the Dr’s are of the view it has been a combined thing between poor asthma control, very high pollen counts and just generally pushing myself a little bit too much recently.

I have to say this admission was not pleasant (well no admission is but this one was particularly not good). It was not so much the severity of the attack which for me was not too bad but it was the other complications that seem to become more of a problem each time I go into hospital. The attack itself took its usual course and I needed my usual treatment but for the Dr’s to be able to give me this was a struggle. Access was a major issue. They just couldnt get any. They couldnt draw blood, the couldnt do an arterial blood gas and they couldnt get a venflon in. It was murder. I know I have pretty rubbish veins from all the previous admissions but they have normally got something into me to use short term.  But not this time. I think we had 5 or 6 dr’s try and each one was more determined than the first. I felt like giving up it was hurting so much. Eventually we got a “pink ” venflon in one of the small veins on the under side of my wrist. It was agony as it was a very superficial vein and was so close to the surface.

If you look closely you can see the vein bulging with the venflon. This luckily lasted for all my IV’s. I don’t know how but it did and I am thankful. The only thing now is that is has been removed it still feels like there is something in it as the vein i think it probably shot as it is really hard and lumpy now. You an see my nice red allergy band too.

Getting the arterial gas was a another similar story but there is part of the saga of getting an ABG that some of the Dr’s think it quite cool (more so the men) the women just find it turns their stomach!!! As much as I hate having ABG’s they are necessary and I know they give the Dr’s a much better idea of how I am coping and what my body is doing and how it is responding to all the chemicals and stuff being pumped into me. So they come to do it I always offer up my left wrist as this has a bounding pulse and is used pretty often for them so it is kinda find a scar and go for it type of idea. The first Dr that tried  was almost sick. I told her she would need to be forceful to get into the artery because of the scarring from previous attempts but this was the easiest place to go for the blood compared to other ABG sites. So she stuck the needle in and was pushing hard and I must say it was very sore. Finally there was a huge crunch and a popping feeling in my wrist. We got the gas but when the Dr took the needle out it was bent and my wrist swollen up so much. I think the crunching feeling the needle going through all the scarred tissue and I am not sure why it all swollen up so much. It was horrible. So this story of getting the first gas was passed on from Dr to Dr some thinking it was kind of cool but there was an underlying worry that I wouldn’t be able to have many more of these. (Given I normally have them every few hours when acutely ill in hospital this was going to be tricky!!!)

I don’t know how many attempts people had over the time I was in hospital at getting blood but it was just impossible. I feel battered and bruised. Dr’s I think have tried everywhere. I had numerous femoral stabs or which all were unsuccessful. My radial pulses are too difficult. For some reason the Dr’s hate doing brachial gases I think because they are more difficult and have a higher risk of complications afterwards. Even just getting a simple FBC blood test was difficult. My hands wouldn’t bleed. I was starting to think I had run out of blood.

~Despite the problems with access and bloods etc the admission was fairly uneventful. I was taken to my usual resp ward. I was given a side room which was nice. The ward I go to is a difficult asthma/ CF unit so they are set up for younger patients and have side rooms with tvs and dvd players and stereos etc in them which does make admissions easier when you are just lying in your bed!!!

Mentally I feel very drained now that I am home. I was given a lot of information during this admission and also found a few things out which I really need to take stock of.

Although I think I am very intune with how my body is I don’t think I am as much as I should be. I don’t think I seem to recognise when I am going downhill or if I do I try and block it out. I have been doing a lot more recently and this has had an effected on me but more of a gradual decline. I hadn’t noticed but I have lost a huge amount of weight even though I have increased my calorie intake. I am a bit worried about this as I dont know what to do to maintain my weight. My BMI is now 17.5 and given that I am 5ft10 and am fairly active and work long hours when on placement I cant really afford to lose weight as my energy levels will suffer etc. Although BMI is not an accurate way of measuring weight loss and body fat content it can be a rough guide and given that I have lost about a stone in just over a month I need to take note. I don’t want to become obsessive about weighing myself and calorie counting but I need to do something to make sure I take enough fo the right calories in and make sure I am maintaining my weight.

(On a side it is kind of bizarre that I have a low BMI now. I used to have a BMI of 26. This wasn’t fat as skin calliper % was very low but I was doing so much sport I was so built up with muscle in my legs and arms that my weight was much heavier. It feels kinda odd to be the reverse!)

I am going to see a dietician to try and maintain my weight and eat the right stuff.

I feel mentally lethargic now and have been told to be off placement for another five days before returning. This has put a scupper to my summer holidays but it cant be helped. I need to do what is best for my chest and listen to my body. I am not going to put my degree in front of my health however much I want to.

There is alot from the past admission I want to talk about and put down in a blog but I need to get my head round it all first and will post shorted blogs on how I feel about it all in time. I think this is kind of a long blog and a bit of a ramble. I may get a few dofferent drafts going and then post a whole load at once and see what happens.

I am just finding this has taken it out of me a bit. If anyone has advise or words of wisdom I would love to hear them. I just don’t feel myself now and kind of lost in a topic I thought I understood a lot about.