Struggling to stay positive

After being seen in neurology I felt kind of positive. I was excited because I was going to be part of a trial for the type of nerve injury I have. I have just received the clinic letter which is eye opening and reading the findings just makes it feel so much more complex. It has also left me feeling really vulnerable and weak. Before I used to get frustrated by people who would stick there nose in if I parked in a disabled parking space because of course you cant see how asthma effects you there is nothing that flags you out as different but now walking with a stick, walking with a big deficit and only being able to wear one pair of shoes that my brace fits in is so visible. I can also feel the pity people have. While in the near waiting room I overheard the people sitting opposite me saying it is so sad when young people have to come in to clinics with such struggles while looking at me with that smile and head tilt. I would right now give anything to go back to just being frustrated by people who like to make judgements.

The most disappointing part of the clinic letter is that I am not suitable for the trial because I have 2 different nerve things going on. If I only had the nerve injury then I would be ok but because of the muscle weakness I have I can no longer be a participant. I have been referred to the neurophysiotherapy team to get them to help me and I also need to go for various tests on my nerves such as nerve conductions studies and EMG done.

The hard part that I find is that this is all so out of my control. Before when I have been unwell it has been my asthma. To be fair I know pretty much all there is to know about asthma or at least my type of asthma so when unwell I can kind of deal with it as I understand what is going on so know how it might pan out. With this I am totally in the dark with it. Nothing is within my control now. I just have to let my nerves heal and do the physio when I am seen. I see the musculoskeletal physio that my GP referred me to tomorrow morning but I’m not sure if I will continue staying there because of the referral to the neuro physio too. I figured I just need to get started and get on the road to recover as best as possible as I cant stay where I am with the brace/splint and wearing trainers out like there is no tomorrow!

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DCN: Department of Clinical Neurology

Last week I was in Manchester at the NHS Expo. On the train my phone went and I saw it was the hospital calling- all calls that come from them show up as the same number no matter the department. Of course I just assumed it was respiratory because who else would be calling me. I was shocked to say the least when I didnt recognise the voice and just heard neurology.

Anyway my GP has been concerned by the symptoms I have been having in my foot and I had apparently said something that raise warning flags so she had been right on the phone to the on call neurologist who then called me.

Long story short they wanted to see me in clinic (which is you have ever been to the WGH it is a flipping nightmare to find)

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The outcome of the outpatient appointment was not too bad. There is no magic fix but it will heal (even though the neurologist did say it will be slow and will be painful). Essentially there are a few things happening but the main one is peroneal nerve paralysis due to injury. The injury being the lines I had in my femoral.

I was feeling sick to my stomach during the day and waiting in the waiting room in DCN. When I attend outpatients normally I am relaxed, because it is somewhere I know and to be honest there is not much about asthma I don’t know. This however spooked me totally. I know nothing about neurology, I was not expecting to find myself in DCN because to me I didnt think I had a neurological issue, in my head I was thinking it was vascular and part of me was expecting to be seeing someone there not neurology.

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The neurologist I saw was really good and very thorough. She did a heap of tests and I was poked with pins and stuff to see how I reacted and what I felt. The oddest part was getting the feeling in the bottom of my feet done. I have such tickley feet so was bracing myself, the left I pulled away almost as she started but and the right I was getting ready to do the same thing but the feeling never came. It is a very odd thing when you can see someone touching your foot but you don’t feel it, but also being told to do certain movements which you think you are doing but there is no movement taking place. It is like my leg stops below my knee.

The outcome of the appointment is physio. I am going to be a participant in a study though looking at this kind of injury and seeing if intensive physio is more beneficial than weekly physio. It is exciting to be able to be part of a trial. Since my asthma has got really bad I am basically excluded from all clinical trials because I have been in critical care or because I am on long term oral steroids so I am stoked to be able to get on a trial. I will keep you posted on how it went.

I am determined to get myself moving forward and make progress. The good thing is that I cannot do anymore damage to it so I don’t need to rest because quite frankly I have done enough of that. The bonus I have is Ghillie. He forces me out walking everyday which will build my muscles and encourage the blood flow (which is compromised due to scarring from all the access I have had).

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Once again though the NHS has been fantastic. My mum had been very concerned about my leg, more so than I was. To me it was just really annoying but once my ankle started swelling as the day went on and then the skin became mottled I knew I needed to be seen. My GP acted super quickly and to be honest I wasn’t sure what I was expecting perhaps a physio referral but I cant thank the NHS enough for once again being there to help me overcome more challenges my body throws at me.

The Implications of Brexit on medication supplies

I think so far I have managed not to mention the B word on my blog. I am not one that is in to politics and after this fiasco I am completely and utterly fed up with it.

One thing over the last few weeks I have noticed there has been more concern over medication availability post Brexit. In the back of my mind I think i had thought we would be ok. I think because our previous prime minister Teresa May lived everyday with a chronic health condition requiring medication multiple times a day, I had assumed that we would be ok because she would surely not screw herself over and leave herself high and dry with no medication. Of course she has Type 1 diabetes which she manages fantastically (or so it appears to the public eye). Whilst she was prime minister there was concerns for our health service and for some drugs that were required but it did not have everyone running around flapping wondering wether or not to stock pile prescriptions.

However now with the current prime minister who appears to have a disregard for everyone in the UK, particualry those who wish to challenge him. However since he has decided to prorogue parliament I have noticed there has been a lot more worry about healthcare- even if he plans to announce new local policy for healthcare when parliament reconvenes after the Queen’s speech.

Only today did I think I was reading the US news

Small side step- Since I went out to Dallas and made so many good friends with people living with all sorts of conditions all across the states I have been made aware of just how awful their health system is. Many don’t have enough money to buy their insulin if they are diabetic, others are collecting medications to send out to those who can’t afford it. This is a side to america I have not been exposed to. I know the insurance system means it is a lottery of what medication they will or will not approve but never did I think there was stock piling and people sending medications to each other just to get by and stay alive.

Back to the UK. The news today had stories about getting your flu injection now before Brexit, also about stock piling your medication particularly if they are medications produced abroad in European countries. It got me thinking about my medications and where they are produced.

I think a lot of it is scare mongering if I am honest. There may be issues in sourcing certain brands of drug but if you are to read the pharma news there is a new drug almost each week which is in short supply due to manufacturing issues.

I live in hope that what I am reading will be fake news and it will never come to this. I have never voiced my political views on here and I am not about to start but for those with chronic health conditions I think Teresa May was the better option.

Recovery- its not easy and so frustrating!!

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

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

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

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

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

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

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

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

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

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

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

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While I breathe I hope.

We need to stop Mepolizumab

Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.

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Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.

In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.

To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.

So what now??

This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!

The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.

Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.

Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

Accepting where I am now (but its not where I want to be)

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I caught site of my shadow today when I was out walking with Ghillie down at Cramond and had to stop and do a double take. I was thinking it cant really be me I was looking down at. I was looking down at the shadow of someone who should be triple my age. Hunched over and with a walking stick (and my leg and foot in a splint). I felt like crying, I was crying inside. To top it off when I was trying to get myself across the long grass to clear up after a Ghillie an elderly lady came over to help me and cleaned up for me before I even got half way there. If I was not feeling bad by then I felt awful. I know she was doing it out of kindness and I did smile and thank her but inside I wanted to scream that I can manage myself and don’t want to be pitied.

I am determined that I will get myself back from where I am. I realised I have not actually posted about the issue with my leg. While I was unwell in the hospital there was a huge struggle for access so in the process of trying to get intra- venous access and also arterial access my nerves have been damaged in my right foot and leg. I cant fee my right foot at all and have foot drop in it which has meant I have a lovely splint/brace thing to wear which keeps my foot in the correct position. I also have a stick to help with my walking as it is tricky when you cant feel your foot. The rest of my leg is in a lot of pain from the lines in my femoral and groin area. Weirdly when i had the lines in I had no issues other than them being a bit annoying. It was not until the lines came out that the trouble started. My leg was achey and whenever I would bend it got shooting nerve pain that would bring tears to my eyes. Oddly at the time and when in hospital there was not much to see. I had and ultra sound and x-rays which were all ok but once I got home all this bruising and swelling came up with my thigh ending up black and blue.

So anyway my leg is causing me so much trouble leaving me feeling like I have aged. When a walk with Ghillie that normally takes me 40 minutes is now taking me 1 hour and a half.

Looking on the positives of my leg it is forcing me to rest and recover from my hospital admission but it is so frustrating too. I just need to think that I am here and shouldn’t moan too much about things.

With focus and positivity I will get back to where I was. I will be able to get myself back to where I was before, slow but steady and things will get there.

(I am still trying to figure out exactly what went on in relation to my last hospital admission. Once I have it all straightened out in my head I will be able to post about it.)