Friendship when you are cant help being unreliable

A common theme when speaking to others who have a chronic illness is the importance of friendships yet so many find that there are very few friends who stick about and understand when you have to call off for the 10th time and cancel attending things.

I have found over the years that this is all too true. I have a lot of people who I consider friends but when everything goes down hill there are very few who stick around no matter what, who drop everything and will come and help you even if it is just because you’re upset and need someone to talk to.

Speaking to others how have chronic illness they all same the same thing. The feeling of isolation can leave you so low and just feel like giving up. It is funny because so many people say they will be there to support you but they are not. Often you find people offer to help when at the start of something but then after a month or so it fizzles out and you are left.

What can we do about this?

I have found that tapping in to the chronic illness community very helpful. I have found that this group of people understand exactly about how important friendship is but then also how there are only a very few that stick around. Living with a chronic illness and having friends who also have a chronic illness is a very special bond as they get it. They understand about the unpredictability of health, the having to cancel thing, or just going off the radar for a while. If this happens it is this group of friends who reach out with a message asking if you need anything or they message to say they are going to the shops and will bring food round. They don’t ask how you are because it is a useless question. Normally if asked how you are we say fine or good. It is rare that we would open up and actually say how we are feeling because it brings a downer on the situation or catch up. These friends know exactly what it is like.

I have been so fortunate to meet some fantastic people in the chronic illness and advocacy network. I have had care packages from people met at the HEaltheVoices conference in Dallas. Even though I was there for 4 days I made friends for life. They know exactly what to say and when. The items in care packages are perfect often items that other friends would not get because they don’t know what it is like to be chronically unwell.

Having a chronic illness that is so unpredictable making plans is hard, you feel like you let people down. Friends stop inviting you to events because you either say no or have to cancel last minute- eventually they just give up.

Advice I would give people is your true friends will stay around no matter what. They stay for the long term. I like to refer to those who don’t stick around as acquaintances.

Always reach out shout you need help especially those who totally understand what you are going through.

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Making asthma visible

Today my youngest brother published an article for the Daily Record. Out of all my siblings he has probably seen me at my worst. He has been there when I have been in tears because registrars cant get an arterial blood gas and they are getting stroppy because I kept flinching when they hit the nerve or worse the bone or visited me when I was in hospital down south and he was still a school boy. He has known about my passion for the issue of smoking on hospital sites as it has caused me so many issues and latterly when my asthma has stopped me doing more he has taken an interested in the work I have been doing to try and raise awareness about asthma and how severe it can be.

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It is a really hard read. Seeing everything down in black and white in one place about how asthma has controlled so much of my life. I feel bad that this article has upset so many. I know my mum was fairly upset as she has obviously been through it all with me and then Nick as well. He has lived with me and yet he didnt know or understand just how bad it can get.

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I know others who have asthma just like mine and have asked if it is ok for them to share this article. I want everyone to share it. If it can show people just how serious asthma can get then I want everyone to see it.

I have kept this blog for so long and written about how asthma has affected me, what being in hospital has been like etc but I never read back over my posts. Not one post has been proof read and thats how I like it. It keeps the emotion real and honest.

I am really proud that my brother has decided to take this on and try to help people realise how serious asthma is and that you cant always see the true effects that asthma has on someones life. It is sad that it takes shocking stories to highlight the devastation that asthma can cause.

 

Madrid with Astra Zeneca

Since getting involved in asthma advocacy and involvement in research I have also been part of the Astra Zeneca Patient Partnership Program (PPP) for Asthma. I do a huge variety of things as part of this program to help Astra Zeneca with their work to improve the lives of people with asthma. This can range from being part of teleconferences discussing potential projects, reviewing information booklets, education materials, or global virtual meetings.

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As part of the PPP I have had the opportunity to meet so many other people affected by asthma, some with severe asthma, some with mild asthma and also those who care for people with asthma.

One of the roles that I find most rewarding is when I am asked to speak about my experiences and be part of a panel. There is a lot of focus just now on severe asthma so when I am asked to speak to people within the company about what it is really like to live day to day with severe asthma I jump at the chance. Severe asthma is so misunderstood and has so many other components and not just the asthma part but the side effects from medication, impact on work or education.

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(the first event I attended with Astra Zeneca just over 3 years ago)

I have not long got back from Madrid where I was part of a patient panel speaking about our input into a project and why it is so important particularly how would it have been helpful when we were newly diagnosed. To be able to speak to a room full of people who are all transfixed on you and what you are saying is a very surreal experience but it makes me see how important my story is and why I need to speak up about life with severe asthma. When working in a large company you often don’t get the chance to meet patients particularly when medication is in development and not ready to be trialled on humans the scientists don’t get to see the impact the end product has so attending these events is key. It shows everyone just how important their work is and what the impact of the end product can be.

We also had some videos recorded about our involvement in the PPP and why the work Astra Zeneca is doing is so important.

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I have had so much fun working with Astra Zeneca. I used to think pharma was just about making money and they didnt have patients at its heart but now my view has totally changed since I have been part of the PPP. All the work they are doing they are looking at how they can include patients to ensure the work is going to make a difference to people with or affected by asthma.

I have also got to make some great friends and would really encourage anyone else who wants to find out more please get in touch. What I have found is that I am getting to see a whole new side to asthma and developments in asthma medication and management which I did not see before and do not see when I am involved in the applied side of research.

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Please drop me a message if you want to find out more about the patient partnership program and how to get involved. I have had such a great time that I would encourage others to join too!

(Please note AZ has not told me what to say and all my opinions are my own)

Post ICU respiratory clinic

I started writing this on Wednesday 9th October as I sat in the waiting room having checked in to clinic. I had so many expectations from clinic and pinned so much on it yet left feeling deflated.

“Sitting in clinic with butterflies flying around my stomach. This is my first clinic appointment with my consultant since being discharged from hospital 2 months ago. I feel like I have been living up at the hospital with seeing so many different people from neurology, muscular-skeletal physio’s, neurology physios, psychologist to name a few. So let’s just add respiratory consultant into the mix to. I think out of all the appointments this is the one I never want to come around. Why? Because I know we are going to be going over what happened and the events leading up to me being on life support. Despite it being 2 months ago I am still not ready to face or talk about what happened or to be told about what happened. I am trying to adapt to my new normal with my stick and leg that has half it’s feeling which in itself is a constant reminder of what happened and how unwell I was. 

Just now as I write this I am sitting outside lung function waiting my turn to see how awful the results are and would give everything for the out patient people to say they got the day wrong and don’t need to see me. My stomach is flipping and it shouldn’t. The consultant for my asthma is here to help me and make things better not worse but I just don’t want to go and see him. Unless there is a magic wand to be waved I want to just get on with stuff myself. Unless there is a new medication on the table or something to improve my health I’m not to bothered about being up at the hospital all the time as I can manage myself just fine if this is how it is going to be”.

This is as far as I got before I was called in to the dreaded lung function room, and as soon as I was out of there I was called in to see my consultant.

How did it all go?

Well lung function was the same as it was at last clinic. I guess that is a positive given that I have had a major attack in between these clinic visits. Then my actual appointment didnt go how I thought it would. I had the expectation that we would be going through the events that occurred during that last attack but we didnt. I had worked myself up thinking this is what we would discuss. I know I sound like I am just moaning because at the start of this post said I was not ready to talk about what happened but so many people had said this is what would be happening so I worked myself up.

I have to go back to clinic again in 7 weeks so will see what is said then.

 

Writing: planned vs spontaneous

This is a draft of a blog post that I started a wee while ago and never posted it. I thought I would post it now. When writing blog posts I have a few different types, I have the updates particularly if I have been to an out patient appointment or something. Then I have my planned posts which are more thought out, proof read and contain more factual information and lastly I have my spontaneous posts where I just feel like writing. These are normally posts that come from a frustrating situation or if something has happened etc.

It has been quite a while since I last wrote spontaneously. To tell the truth I have been finding everything fairly tough both mentally and physically that the thought of sitting down to write has filled me with dread as that means thinking and verbalising what has been going on and I just cant. Although during this time I have had lots of ideas about blog posts to write and have a list of topic ideas, and even have opening sentences for them all in my head but trying to actually put pen to paper so to speak is just too much. The blog post topics that I have noted down are:

  • life after ICU
  • friendship with chronic illness
  • why is health advocacy so important
  • the unseen side of severe asthma
  • value of learning from people who don’t have your condition but have something else
  • staying active when your body does not want to cooperate
  • what I wish I could say to my drs and medical team (perhaps broken up into different blog posts- a letter to my consultant, a letter to my GP, a letter to my asthma nurse etc)
  • addressing the work life balance
  • the benefit system and navigating it

I hope in the next few weeks to feel a bit brighter and can start writing again freely as I do miss just getting an idea and sitting down to write.

I have also been at quite a few events recently which I have not written about and must write them up as well. Lots to be getting on with just now!

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.