Itching, burning and needed advice.

Just to say before getting into this post, I attempted to get advice and help for the situation I was in but hit a brick wall. All is semi ok now thank goodness and all is safe.

In previous posts I have talked about allergic reactions and allergies, which of late (last 6 months or so) have been getting worse, more difficult to manage and coming out of the blue. I have had various allergies for a long time, followed a salicylate free diet and always reacted badly to insect bites etc, but nothing quite like this.

Something Im not really that familiar with about myself is really quite scary. I think it is because I just can’t get a hold of them and don’t know what it is that is triggering these reactions.

So anyway the other night I had a fairly bad reaction, I was home alone, it was the evening, I had maxed out on anti histamines and was not sure what else I should do short of scratch my skin off.  My face looked like this despite having 14mg pred, 12mg chlorophenamine, 180mg fexofenadine, 10mg citirizine on board!

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I went red and blotchy all over to so thought I had better call NHS24 just to check out if there was anything else I should be doing or if I should take some extra steroids to help.

So phoning through I spoke to a call handler and explained what has gone on and she asked about various allergies I have and if I could identify what caused this reaction. I wasn’t able to tell what caused it. She tried to get through to a nurse but couldn’t so said I should expect a call back within the next 3 hours from a nurse. So I just waited and with 10 minutes before the 3 hour time I got a call back from a call handler who ran through various questions which included if the reaction had changed or got worse which by this time it had spread all over my body, my face particularly my eye and ear on the left side were quite swollen and I had hives developing too. She must have been relaying this information to a nurse as she came back saying not to do anything different and see how it goes. I asked if I should take some more prednisilone or more antihistamine to help to which she relayed to the nurse and was told no. I was then told that if it didnt get better to call my GP in the morning and take it from there. I was also told to have a cold shower and they went. That was the end of the conversation.

I felt really upset and scared after this. I just wanted some reassurance about what I should be doing and what I shouldn’t do, what to expect etc whereas I was basically told to sit tight and if in 11 hours time (8am GP opening time) things were still the same or worse I should call them. I came off the phone feeling like an idiot. The first call I told them how I had had previous reactions and the last hospital admission I had an allergic reaction that sent me to high dependancy unit.

I thought to myself, clam down and just think what is the logical thing to do. I knew I could take more chlorophenamine soon and would be taking my ranitidine soon too which has antihistamine properties in it, I also had my inhalers to take and various nebulisers so my breathing was going to get a boost but I was still worried so I decided to take some more steroids. Even though they told me not to from previous reactions I have always been given steroids so I thought I should take them. I knew I wouldn’t be overdosing myself or anything by taking a dose and weighed up that it was safer to than not to take them. I got cool flannels to try and cool the hives down and stop my face burning. It was a long process but it eventually settled down about 4am or so. I did not get much sleep that night- infant my fitbit which was on me recorded no sleep that night at all.

I do feel now looking back, why did I bother to call NHS24 when they did nothing to reassure me or offer any advice. They left me feeling scared and vulnerable. I guess I am lucky on two fronts one that I have had reactions before and have had some experience at dealing with them and that I am a nurse so have some knowledge but if I hadn’t had either of those 2 things Im not sure what I would have done. The next step I guess would be to go to A&E but really is that needed for an allergic reaction. I suppose yes as they can be life threatening especially delayed reaction which I sometimes get.

From this I have learnt some good lessons.

  1. you know your own body
  2. im glad i have steroids to increase dose if needed
  3. im a nurse
  4. not to rely on NHS24 and go with my gut

I know my condition is quite complex and maybe I did over react but when you have lungs that are on a knife edge anyway you don’t want to do anything which might just cause them to tip and go overboard- because that is just too much hard work to deal with and a fight I really don’t have the energy for!!

I will be going to the GP and have immunology soon to so things are moving forward with finding out what is going on and if it is just that my body is not as strong so thats why I am having worse allergic reactions than I was before.

A Good Night Sleep!

It is strange to think how something so simple as a bed can make a huge difference and mean the difference between 3 or 4 nebulisers and just 1 nebuliser treatment.

Often, and this is something I say myself as a nurse to patients is that I bet they look forward to a getting back into their own bed when I/ they get discharged from hospital. You would think you would want your own bed and it would be the best thing. But for me it was not the lure of my own bed. The thought of freedom and having my own space etc is great but my own bed was not what I looked forward to. A bed in the hospital is a profiling bed which can sit you up bend your knees etc, compared with beds at home which are just flat and depending on how much support you want or how propped up you want to be you can have an assortment of pillows. So other than in hospital I have found it very difficult to sleep a full night. My assortment of 10 pillows made up from a collection of normal pillows, memory foam pillows, v pillow, long body pillow does not give me a peaceful night. I start off comfy and propped up but they loose their bounce and you just flatten them over time, also as you wriggle they move and you end up falling between the gaps or just fall off them, meaning I make up coughing and short of breath because I find it very difficult to lie flat and keep breathing!

So what can be done shy of sleeping either in a chair or in hospital?

Well I recently got measured and fitted up for a bespoke electric bed which accommodates my height, leg length etc. Wednesday night the guys came out and built the bed which was made to suit me in every way including the height that the bed is from the floor.

This bed is awesome. For the first time in as long as I can remember other than being in hospital I have had a decent night sleep. I was able to get rid of 9 pillows, sleeping on just one. I was able to bing my knees up and then the back of the bed up to a position where I was almost sitting but not quite. It was so comfy. The mattress felt like it was really supporting me, the massage function in the legs meant I could set it to go for 15 minutes to try and settle my restless legs and I was good to go for a good nights sleep. Waking only once due to wheezing and coughing.

It was bizarre having a good night sleep. When I woke to my alarm I felt a bit confused as I was still in a fairly deep sleep but also I hadn’t been up over night other than the one time. I think having a full night sleep made me more tired as I am sure I could have slept for a lot longer if I didnt have work to go into.

I am now kicking myself that I didnt do something like this years ago but part of it is accepting that this will be lifelong and its not going to magically get better over night so I am in for the long haul I may as well do things that will benefit me such as getting a new bed which can give me a good night sleep.

It is a very strange feeling because the excitement of getting a new bed is tinged with sadness as it is bowing down to the asthma and giving in. I feel just now I am doing more and more things to make accommodations because of it rather than just ploughing through and ploughing through is no longer an option. I just don’t have the energy to do it anymore. Even just a days work leaves me exhausted and its only 5 and a bit hours. The exhaustion is not just a go to bed early and sleep but you feel like lead, muscles ache, your head feels heavy so hopefully having a new bed that will give me a decent night sleep will help and impact me during the day giving me more energy!!

PIP- Step 1

aka Personal Independence Payment (the new DLA)

This is my experience and my perspective on the application process which may not be what everyone experiences.

The time finally came to apply for PIP. That benefit that you read and hear of so many horror stories about. The benefit that so many people seem to want but can’t get. I have held on for so long not to apply for this but realising now that I need to, as I can’t work as much as I did and can’t walk to places like I used to, constantly using my car to get places where I once may have walked or jumped on the bus.

Watching programs on TV, and reading newspapers and magazines you see all these people trying to apply for PIP because they think they cannot work due to back pain or similar yet can go out running, or to the pub etc (not everyone is like that but there are some and for me I feel like they are the ones who kick up the biggest fuss when they get rejected). I was feeling a bit daunted about filling the forms out because how do you put into words the sheer exhaustion, terror, pain you feel most days but only have a small box to write in. How do you write your life in words?

I started off by gathering all the bits of paper, prescriptions, discharge letters, care plans together so I had all my information together. Im not sure if it is a good thing but the day I filled out the PIP form I had been up all night with my breathing- or difficulty breathing so was exhausted, irritable and feeling very low which I guess was good as it made me really think about the questions I was being asked and how did actually do the different tasks in the actives of daily living.

It was a real shock and felt like I had been thrown from a great height when I after I thought I completed them form and read over my answers I saw just how much I adapt what I do because of the effect my chest has on me, but not just my chest but also my dyslexia, issues with my eyes and allergies (which is a whole other post because things have been changing with them!).

Some parts of the form I found quite odd for example the bit about walking. They wanted exact numbers but how do you explain that you can sometimes walk and are ok, but other days just getting across the room is a challenge and can leave you gasping for air. It is also trying to explain that walking a distance leaves you out of breath so you stop and catch your breath, take inhaler but then can’t walk that same distance again. This can also be hampered by things you are exposed to for example car fumes, cigarette smoke, high pollen counts, strong perfume, the list is endless. If i was to walk around in a bubble all the time it would make life easier but thats not possible and its not possible to know what you are going to be exposed to on any given day. When a conditions varies so much it is really hard. How do you write this paragraph in a small space on a form. You can’t.

One thing I did notice was being honest. You need to say it as it is. Don’t try and make it sound worse than you are but equally don’t make it sound better than you are. They need the true picture of what it is like the good the bad and the ugly! Many may just tick the box saying they need help with everything but not say what help it is they need. For example the washing and dressing part I ticked that I sometimes need help. When in hospital there is no way I can wash and dress myself as i just don’t have the breath but then once i do have the puff I use a chair and my portable nebuliser which I use mid way through washing and dressing. At home I have a stool in my shower so can sit and wash and then use this to help dress to. For the medication part I get my tablets weekly from my pharmacist not because I am not trusted with my meds but because there are just so many tablets. They are put out in a weekly dosette for me. When I feel rubbish it is hard to track what pills you have or have not taken and if you have taken the right dose so this is a huge help. It also means I have a whole free cupboard in the bathroom now which was previously filled with boxes of tablets!

I also made my GP, asthma nurse and consultants aware that I was applying so they would know and they didn’t get letter requests out of the blue wanting information about me.

I didnt send the form straight in after I completed it. I held onto it for a few days so I could read over what I had written when I was feeling a different way to see if there was anything I had missed. I also was not sure what information to include with the form. They do say they don’t want multiple copies of discharge letters, and outpatient appointment letters etc so I decided to send my care plan in which highlights the difficulties in treating my asthma when I present acutely, I also had 2 discharge letters from my most recent admissions- one being from when I ended up in intensive care and the other was high dependency but they both showed the way my asthma can be unpredictable and the most recent one included the difficulties with my allergies so that was why I put two in. I enclosed my repeat prescription list which also had the dates of last requested on it, i felt this was important as it shows that everything I am prescribed I use regularly and are not just on the list for use once in a blue moon (although that would be awesome to not have 34 medications which I need on a daily basis). I also included the occupational health reports from my most recent meeting and the letter I received from my boss after I had a return to work meeting with them which highlights the changes which have had to be made to my job because of my health and how my sick time can’t be supported long term (for me the fact that I still have a job i am over the moon about but i know there will come a time when enough is enough and I need to stop working which terrifies me- not the fact about not having a job but the fact that asthma has been the reason that I can’t work). I also included my dyslexia report which spells out the problems I have and what I need to correct this. A photocopy of my blue badge and disabled persons bus pass was also included.

The process for the PIP application so far has been ok. I am thinking that because what I have written is reflected in the various letters and reports I have enclosed. I know they will want to get in touch with the various healthcare professionals involved in my care as well to get their input and view on my health and situation.

It is then a waiting game for about 6 weeks to find out if you need a face to face assessment or are awarded PIP on the merits of the evidence they been provided.

Its ok to say No, sometimes its just too hard!

One thing I know I am not alone with is having the ability to say No to something despite desperately wanting to do whatever it is but knowing you just shouldn’t because it will have a detrimental effect on your breathing.

One part of me finds it easy to say No. But its only easy to say No when you really don’t feel great. When all you want to do is curl up and sleep or watch TV or read a book because your chest aches, and you are exhausted beyond imagination. Its very easy to say No then.

But when you feel pretty good how do you rationalise things and know what to say No to. How do you know what is worth not saying No to and when its just not worth it. It is the times when you are sitting in your living room feeling fairly good- but this feeling is because you are sitting and you are not exerting yourself, or pushing through barriers which may cause you issues with breathing or pain.

I guess I thought about this post when I was having a trip down memory lane and came across photos where I used to act before I would think. I would have fun, I would push my body and deal with the consequences after. I didnt think about the angst I probably put people through, I was not wanting my health stop me from doing things and really I didnt want to miss out on what I thought was important events which I now look back on and realise they really were not that important and were things that were not essential to my health and well being.

This was a time in my life where I didnt say No ever. I am not sure how much I thought about making decisions. I think I always said yes! I had fun doing things but would life be different now if I had the maturity to say No??

Im not sure life would be different physically. My asthma I don’t think would be any different or my health any better if I had said No. But looking back at the photos I do wish I had been able to say No as I can see myself as not very well, thin and tired looking despite trying my hardest to just be a student. I was so worried I would be missing out on something. Thinking now Im not sure what I thought I would miss out on- maybe fun and games and no doubt a killer hangover something which I can now say No to.

Maturity has taught me it is ok to say No. Your friends won’t leave you behind. The true friends will include you in things even when you don’t feel great. They will understand how you are feeling and won’t press you to do things. I think I was so worried about missing out in the past that I just forced myself to do things. Now I know that missing out on somethings is worth it in the long run as you can do the things that are really important and the occasions you really don’t want to miss- such as weddings or events such a lacrosse things etc.

It is a balancing act and does take strength to acknowledge that you can’t do everything. There are somethings that are really important. To me work is important, being involved in AUKCAR is important to me, being involved in Scotland Lacrosse is important to me too which is why I have decided to give up somethings which I thought were really important but are not in the scheme of things. I am not going to be doing club lacrosse this year as I have been part of the club for the last 5 years but I do hope I will still be stringing sticks as this is something I love doing and something I can do no matter how I am feeling!!! I am also prioritising AUKCAR over other bits and pieces.

I know there will be times where I won’t be able to say No but if I can rationalise why I can’t say No and if the risks are worth it then maybe it is ok to say Yes.

Here are some of the photos which prompted me to write this post!

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This was playing football for my old university. I think I had just fouled someone but after this match I ended up in hospital with my asthma.

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A night out at University. Just having fun and being a student. Trying to forget about all my worries!

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My 21st birthday or near it. The effects of steroids starting to show but it was good times!

Good times will always have happy memories and I am sure there will be more good times to follow but I hope they won’t have the consequences that some of these times had. One day asthma maybe better understood and there may even be a cure. Until then making choices will be part of life and weighing up how you feel but always remembering it is ok to say No. I now ask myself is it better to miss out on something that may only be a few hours of good time or risk having a good time and then lose weeks due to being in hospital and then time off work etc when you end up missing more things than you would have if you just said No in the first place.

Its a tough one and one that everyone who has a chronic medical condition will face. Do you say yes or do you say no. Remember its ok to say no and think of yourself.

999 or 111- when to get help.

For readers from outside the UK 999 is our emergency number and 111 is what we call NHS 24 where you call and get triaged my a call handler, speak to a nurse and then see a GP at an out of hours clinic if needed!

Recently I have seen a lot questions regarding asthma, asthma attacks and when do you call 999 versus 111.

It is a tricky question to answer because if you have fairly uncontrolled asthma and have to go to hospital fairly often you will be reluctant to call 999 because calling 999 inevitably results in hospital which no one wants to go to.

I would always say if your not responding to treatment and in an acute attack then call 999 because 111 won’t be able to cater for you and they would no doubt send an ambulance to you anyway. But that is easy for me to say when I am sitting here typing and have my rationale head on and am not sitting during an attack knowing that things are not good but also know that going to hospital means getting an ambulance, rushed across Edinburgh, into the resus room where you have people pulling your clothes off, sticking a gown on, needles being stuck into you, masks and stickies stuck on you and 101 things happening at once and then there is that dreaded wait when they decide if your well enough for assessment unit or need to go to critical care. But its not just about these steps. These moments are fine. Its what all of this adds up to. It adds up to another week in hospital, another wean from high dose steroids but mostly for me it means more time off work.

For me I hate being off work so will if I can avoid 999. If I can I will go via 111 for a few reasons mentally for me 111 is not as urgent as 999. It means being referred on to a hospital which will send the on call resp team to see you straight away so they initiate treatment quicker as they have experience in dealing with brittle asthma and then hopefully you avoid critical care and go to the ward and can go home quicker.

Is this rational???

NO!!!

Is this sensible???

NO!!!

But when you have an attack it is kind of like trying to be coherent when you have had far to many alcoholic drinks. You don’t think rationally. You need someone to advocate for you. You need your rationale head on when you can’t.

Its trying to separate what you should do with what you want to do. Now I must say I am getting better at dealing with attacks and calling early but as I have read and heard from many asthmatics they say things like:

“the paramedics didnt think I was that bad”

“my sats were fine so they didnt take me seriously”

“I wasn’t wheezing so they left me and said it was a panic attack”

These three examples are just some of the things I have read when people say why they didnt get help early and it is really hard. I have often had paramedics say that I’m ok and they will take me in as a precaution for me to suddenly get worse in the ambulance and end up being rushed in. Which is fine but when they first turn up and you feel like your having to justify why you called them can be really hard. I have never ended up not getting worse either when they are at my house or when we are in transit but it is hard and I can see why some people really don’t want to call for help.

The second part is when others go into hospital under their own steam and go early only to be told they are not wheezy, or they sats are fine and its just panic or VCD. There will be a proportion of those who do panic and thats natural but when a Dr says this and you feel awful its not helpful.

What I have found to be invaluable is having a care plan drawn up which doesn’t dictate how to treat me but it summarises how my asthma presents for example that i do hold my oxygen saturations but when I get tired they do plummet very quickly which is why I may sometimes appear to be ok.

It can be hard and when you feel like you need to justify why you came to get help can be so demoralising and can put you off getting help in future but please don’t wait.

If you do have an action plan. Follow it and get help when you feel you need it. Asthma can be so fickle and even those with the mildest form of asthma can have attacks which can land them in hospital or even worse can kill you. No one is invincible to asthma attacks from the mildest to most severe. If you do feel that you are being judged for getting help early tell the Dr that you know the stats on asthma and that it will be a lot less work for them to treat a miler asthma attack than dealing with you coming in later and needing more invasive treatment, monitoring and more staff to look after you. Nipping an attack in the bud is the way forward.

I guess what I am trying to say is that if you feel you need help then go get it. When you don’t feel well you will take things more to heart and wonder why you bothered getting help but let me assure you getting help early is so worth it. Don’t take the risk or the gamble as your life is not worth it.

If your in any doubt and notice you need more rescue inhaler see your GP or 111 if at night or the weekend but try get seen before you get to the stages of needing 999 and blue flashing lights.

Support Groups and Friends

One thing over the years of having tricky asthma I have found that support groups and online groups have been invaluable to me. Brittle asthma is very uncommon and not everyone has it so not many people really understand what its like to live with day to day, not knowing how your going to be from day to day. One day you could be fine and have very few symptoms but then next day you feel awful and just getting dressed is a huge achievement!!!

This is where the support network comes into play. I have seen support groups evolve and change back from the days of the very basic Asthma UK message boards before the days of Facebook and some people from there I am still in touch with, it is sad to look bak and see how many of those members from the early days have now died as either a result of asthma or as a result of medications they needed for their asthma. But thankfully many are still around and I am still in touch with.

As time has evolved so has social networking meaning you can have connection with people all over the place. It can be very toxic but for those toxic people there is always a gem out there who you can just relate to. I used to feel ashamed I think would be the right word of being part of support groups but over time I don’t feel that way as many have been really needed. At times when no nurses or Dr’s or friends can answer my questions it is these other people who live with the same or very similar conditions can help me and relate to what I am going through. These sources have been invaluable and really kept me going. The one huge advantage I have found is that I have made connections through this blog and support groups all over the world meaning that when its the middle of the night (and it was when I started write this post) and I can’t sleep that there are others who are awake and there at the end of a message or a post.

One thing I have learnt is that you can get burnt by people who will take advantage and dupe you but they get found out. I have been able to direct a lot of people within the UK to AUKCAR and they can get the same benefits that I do when you are not able to work like you want to or need to take down time but your brain is still wanting to go 100 miles an hour.

Not everyone agrees with support groups and social media but as long as you can keep yourself safe then they can be really special to you and prove to be an invaluable source of information and support when things are rough and you can be support to others offering your advice because we can only offer advice through the hurdles we have had to get over, go around or get knocked down by.

The Ventilator is in ICU

I briefly mentioned this in my previous post but it has preyed on my mind. During my last admission I had a bit of a rough patch where if I am honest I was terrified to the point my youngest brother came in to see me and help me sort things out. I just kept being exposed to triggers on the ward and there was a huge lack of communication until things got bad and finally action was taken.

Eventually being seen by the respiratory registrar who was a bit brutal on two counts. First trying to get an arterial blood gas and being pretty arrogant with it. The whole admission everyone has failed at getting a gas- from junior Drs, A&E Dr’s, ICU Dr’s, ICU Advanced Nurse practitioners and the ultrasound machine, no one could get a gas but this reg seemed to think she would be the one to get it and of course she failed and hit a nerve prompting her to tell me that i had to stay still otherwise she wold get stabbed with the needle….when you hit a nerve its hard to stay still and the pain was excruciating so I didnt let her try again to which I was told I was refusing treatment. After my brother showed her the care plan in which it says about the difficulty in getting an arterial blood gas she changed her tone and was totally different. I think she saw I wasn’t just being difficult despite the arms which were covered in bruises which kind of showed I was being compliant in letting them stab me numerous times.

Anyway after all this she told me my asthma was so uncontrollable and brittle that the next step if I deteriorated was to go to Intensive Care because there was ventilators there if I should go down hill that much, and that we all know asthma can be very dangerous.

This has really prayed on my mind. I think because it was so bluntly verbalised with what to me felt like no real care or compassion. It was just said like a throw away comment. I have been thinking a lot about it over the past few weeks and it does scare me. I kind of have this fear now whenever I get a bit chesty and sort of don’t do something incase it could cause an attack which in turn could land me in hospital etc etc.