The gift that keeps on giving!!

Many on long term oral prednisolone will be familiar with the saying that it is the gift that keeps on giving. It is the one medication that gives those who are taking it life but also results in many secondary conditions resulting due to the side effects and the prolonged side effects.

I have written before that I have a love hate relationship with oral steroids. My lungs need them but the rest of my body certainly does not. Recently I have felt that the prednisolone just keeps on hitting me in the face with one thing after another from destroying my adrenal gland meaning unless there is a miracle I will never get off steroids, my bones have been leached of all their goodness and now have osteoporosis, my pancreas is affected meaning I have constantly high blood sugar levels, I have had issues with my eyes as well but never to the extent I do now.

For a good number of years now I have had swollen optic nerves. This has not caused me too much bother other than some pretty bad headaches, these headaches have been getting worse and more often to the point a few weeks ago it floored me. I was in bed the entire day, feeling sick and being sick. I have not had a migraine before but thee headaches are what I imagine they are like.

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I went to my optician last October- I was early for my annual check but I kept getting blurred vision at night and the feeling of having a film over my eyes which no matter how much I rubbed them or put moisturising drops still did not ease the discomfort. At this appointment we discovered I was missing a large chunk of my peripheral vision. I did the visual field test a number of times but each time I kept missing a full 1/4 of the circle in my left eye. Obviously this is not normal so I was referred on to the eye hospital with the final consultant visit the other day. I have been having a variety of scans, tests and drops put in my eyes to try and establish what is going on and the appointment was going to be the reveal all and I was hoping it would be an easy fix and also (clutching at straws a little) it would be something other than an effect from the prednisolone.

Anyway I saw the consultant who needs to speak to another consultant because she doesn’t really know what it is that is wrong but there is something seriously wrong. This did not fill be with hope. You go to the consultant because they know these things and can tell you what is wrong but its more waiting for just now while she speaks to her colleague, she is also wanting me to have a head MRI so they can get a better view of things but Im not really sure how that will help them as I don’t think it will show them anything in more details than they already have but maybe it will.

The long and short of it is I have swollen optic nerves but also the outside of the optic nerve is being compressed so the middle of it is bulging out and there is fluid accumulating with it. They don’t know why or how. They are not convinced it is related to my brain as the headaches I get are not consistent with raised intercrainial pressure which is reassuring. So its back to the waiting game.

Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

SMC approves Benralizumab (Fasenra)

Today was a big day for many Scottish people living with severe asthma. Many of us live day to day taking medications that do not fully help relieve our asthma symptoms and keep our asthma under control. It can be very frustrating and scary to live day to day not knowing how you will be.

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In the UK medication approval is not universal. England and Scotland have different groups which approve or reject medications which could become part of the NHS formulary making it available to patients.

England have NICE- the National Institute of Clinical Excellence. NICE approved Fasenra earlier this year meaning it was available to patients who fit the criteria for it. However in Scotland we had a longer wait meaning many with severe asthma have been able to see the positive effects this drug has had on people in England knowing that they are not guaranteed it because the Scottish Medicines Consortium (SMC) has to approve it. The last monoclonal antibody Reslizumab was approved by NICE but rejected by the SMC so many were waiting with baited breath today to see what the SMC would do.

It was a huge relief today when I got a phonemail from Asthma UK to say it has been approved. This means there is one more drug out there for those with severe asthma to try and hope that it will be their wonder drug. The weird thing with monoclonal antibody treatments (aka the mabs) is that they work for some and not for others. Just because you qualify for them through your IgE or eosinophil count does not mean that it will make a difference. This leaves many feeling lost and wondering if there will ever be a break for them from living with daily symptoms struggling to breath something no one should ever have to do.

The below is part of the press release from Asthma UK which I contributed to about the impact that severe asthma has had only life and what the approval by the SMC means:

“My severe asthma leaves me gasping for breath, exhausted and unable to even walk down the road. While I’ve had asthma all my life, it worsened as I got older. I had no choice but to take long-term oral steroids at a high dose which has left me with terrible side effects including osteoporosis. I used to be sporty and had my dream job as a nurse but my asthma got so bad I had to give it up. This new drug could transform my life allowing me to get back into work and regain my independence. It’s high time that severe asthma was taken seriously and that everyone who needs this kind of drug is able to get it.”

I was also interviewed for the radio which went out across Global Radio Networks this evening which was also focused on living with severe asthma, the effects medications to date have had on me and what Fasenra could mean for me and many others like me.

I am really proud to have been able to share my story but also that there is light at the end of the tunnel for others. It finally feels like severe asthma is being recognised. It seems that asthma only makes the headlines when a young person dies from an attack which is catastrophic but asthma should not be in the headlines for this, this should not even be occurring but it is. Despite this asthma is not being recognised. Hopefully there will be enough coverage about the approval of Fasenra in Scotland and how many people it may benefit from it that asthma may get taken more seriously and there will be more funding available to help those with severe asthma whose lives are being dictated by a condition that is so misunderstood despite their own and their medical teams best efforts to control it.

For me I had hoped mepolizumab would be my wonder drug. I still hope that it will be but I am not sure. I am still reliant on oral steroids and not able to reduce my maintenance dose, I have had to give up work, have also recently decided to step back from some of my lacrosse commitments all because of my asthma. My best efforts to control it are not enough but there are limited medications available to me that I have not tried which could help me. With each new drug that is approved there is that little bit more hope that one day my asthma will no longer dictate my life and just be a part of my life that does not cause me any problems.

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.

 

Toughest week & cancelling events

This past week has been really tough. Tougher than any I have had in a long time. Last week was week 4 of mepolizumab and was due my next dose. I always find that week 4 is tough, my peak flow drops and I feel more symptomatic and tired. This past week had been just like that. Normally I can manage my week and pace myself but not this week. I just couldn’t do it.

I hate having to pull out of events I am meant to be attending, I hardly ever do it and if I do it is normally because I have not had a choice and I am in hospital. This time though I had to pull out of things even though I was not in hospital. I think this is why ever since I felt like a failure and felt guilty for letting people down. Part of my brain keeps saying that I am not working just now in the hospital so I don’t have any excuses to not have the energy I need to attend meetings. At least when I was up at the hospital working and I came home I had a decent excuse for feeling wiped out and tired but what excuse do I have now- I don’t have one because everything I do with my day is in my control and I don’t have any real external factors that are going to make me feel awful.

On Monday I got my mepolizumab only just as had a headache from hell. I think it was a migraine rather than a headache as I was sick and couldn’t do anything. My Mum came over and drove me for some fresh air and after I just went to bed. Nothing shifted the headache- not even oromorph touched it. The whole time I was lying in bed trying to not move an inch so my head wouldn’t hurt I kept going over and over all the things I had cancelled the week before because my lungs were not great. It is just so frustrating because part of me wonders what else will I need to give up to enable my chest to allow me to live some sort of normal life. As each year comes it really feels like I am having to give up more and more, and question myself as to what will be next, what part of life will need to go so I can keep my lungs at bay.

For me I have always had the attitude I can do anything and will get through anything but this week I have just not been able to. I would say it is the first set back I have had. My mum commented how she thought I was the worst I had been in a long time and my Dad noticed how chesty I was getting when playing with Ghillie and my nephew. It is really frustrating and I am sure it is only a blip and I will be able to get back on top of things but sometimes I wonder have I done the right thing. Am I doing the rights things just now.

The biggest question I have that hangs over me and leaves my mind spinning at night is this what my life has become and is this what it will be like forever. Will I always be the sick one, the one that cancels things, the one that no longer gets invited to things, will it just be me relying on family to help me because I can’t help myself because of my stupid lungs. I always like to think I have been there for others. I would go help at the drop of a hat if someone needed it but then I feel other than 2 people it is not something I really have. Of course friends always get bored of you cancelling things and just begin to not invite you to things or keep you in the loop about stuff when you have decided to take a back seat. It is the little things like this that really hurt and leave you questioning was it worth putting all those hours in for essentially a slap in the face.

People say I need to put myself first and do what is right for me but by doing that it means others will be let down, others will get pissed off and i fear people will think I am selfish and I will lose those few friends I have who have stuck around despite everything. It would be so nice for someone to just say its ok and its not always going to be like this. Right now all I want to do is go back to being the care free person who despite having severe asthma was able to play 9 holes of golf before a 13 hour shift, go on nights out and be the last person standing, be able to play a full 1hour of lacrosse without a worry,  not need to plan in advance and think about all the hazards I might come across. I try to put a brave face on it and not let people see how much it gets to me but right now I feel weak and feel like this disease is beating me. Is this new treatment working, is there a point to keep being given it when I am not making much headway due to all the damage that has been done.

Someone waving a magic wand would be great even for just an evenings break from it al and to forget about all the worries wold be great.

Coping with allergic reactions

I have written a lot about my allergies and how the affect me. Being allergic to salicylic acid is a nightmare. It is in everything from fruit and veg to toothpaste. I have been salicylate free for a good 10 or so years now. On days where my asthma is not too bad I can manage food that has a low level of salicylic acid in it but even then I still react a bit but just break out in hives, go bright red, itchy and get a really productive chest and upper airways. This is with 3 different anti histamines onboard, a H2 blocker and oral steroids. I hate to think what I would be like if I did not take all of that and had a reaction.

The physical impact of allergic reactions is not great and the left overs hang around for ages, the itching particularly and then the exhaustion which is not helped by the extra anti-histamines I have to take when I do have a reaction.

For me the effect an allergic reaction has on me mentally is fairly significant. For example today I had a reaction when having my lunch. I had a lovely morning down at Cramond with Ghillie followed by some formal obedience training for Ghillie. The afternoon was full with meetings at the university. I had a reaction at lunchtime which knocked me for 6. I tried to get on top of it quickly so I would be able to make it to the university for my meetings but it didn’t work. I had to cancel and bail out of them. This is the part of having an unpredictable condition that I find so hard to deal with and cant find a good way to deal with it.

My main concern that I think about is what others think. I know I shouldn’t worry about what others are thinking and today of all days I should not have worried especially as the meetings I was meant to be at were with researchers from AUKCAR who all know about allergic reactions. You see so much and hear so much about people who say they have allergies to things but they don’t, it might be an intolerance or something just doesn’t agree with them but it is not a real allergy. This worries me so much as salicylic acid is in so much and I think people must think I am a fussy eater. I also have heard so many times from people who say their friend or family has allergies but they still eat things so it gives this false sense of what an allergy actually is. I have this fear that people think I am a hypochondriac when I wont go near stuff etc.

I don’t really know what I am trying to say other than my salicylic acid allergy is really difficult for me to deal with and having to cancel things at the drop of a hat due to a reaction is so frustrating as there is nothing more I can do to keep them in check.

In this day and age I just wish people would understand what a true allergy is compared to what disagrees with them or is an intolerance etc. It seems like everyone has allergies particularly gluten just now. In restaurants every other person appears to be ordering things that are gluten free yet then tuck into the bread or when they don’t like the taste fo the gluten free option they switch and just have the normal food. If it was a real allergy you would not be doing that, you would be avoiding the food like the plague.

One day I am sure I will be able to get a better handle on things and manage them in a way that I can recover from them quickly so I am not having to cancel plans so often.

A take away I would like readers to think about is how the person who is having to cancel things feels. I never do it because I want to, I cancel because I have to.

PEARLS Ambassador

While at #HealtheVoices19 Rick Guidotti gave the key note speech. I had never heard of him or the work he was doing but as soon as he started to speak I was in awe. He spoke with such passion and exuded positivity. It is no surprise that he is the man behind Positive Exposure a movement which celebrates the beauty of human diversity. Just because you may look different, or sound different you can still be celebrated for being you. Positive Exposure embraces everyone.

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Being able to speak with Rick and then have my photo taken with him was amazing and then being able to continue the conversation over email once I was back home has just emphasised to me the passion Rick has for the work he does.

One of the Projects he has within Positive Exposure is the PEARLS Project and I am delighted to be a PEARLS ambassador and part of a platform made up of other like minded people who are empowered to be advocates and use their voice to make a change. The other advantage with the PEARLS Platform is that it is a safe online blogging platform where all ambassadors can see what each other post and feel safe doing so.

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I am really proud to be part of such an amazing network and can’t wait to see what happens going forward.