I hate crying. In fact Im not sure anyone would say they like to cry. It is an emotion relating to sadness and distress so one we never want to experience if possible (There is the odd occasion that laughter renders us crying in which case it’s not so bad).
I am not much of a crier and it takes a lot to make me cry. Giving up my job really left me pretty low but I didnt ever cry about it. I was upset and close to tears but never actually cried. I am the same in clinic appointments I get upset but never shed a tear.
The few last weeks I have found really tough. I have cried a lot which is when I realised just how tough I was finding dealing with my health just now. The first time I cried was with my physio when she said that the feeling probably wouldn’t come back in my leg but the work we did would help my knee to compensate and it would learn to feel what my foot is not. Things like walking will be easier as my knee learns to recognise the impact when walking etc. I just couldn’t help but cry.
My leg has been the cause for me crying more in the recent weeks than anything else has. I was speaking to my mum briefly about stuff and she has been helping me apply for ESA too. I almost ended up in tears and after she left I ended up in a lot of tears. For years I have dealt with my asthma and it has upset me but not left me in the turmoil that my leg has. I know more about asthma that most of the professionals do, what I don’t know about asthma is probably not worth knowing, but my leg I have no clue what is going on and no one can give me an answer about what is wrong with it or how long it will go on for. All anyone has said is that the feeling most likely will not come back as there has been no improvement in sensation so far.
I am trying to stay positive about it and also trying to learn to adapt and be as independent as possible. I don’t want to sit and wait for this one day to suddenly get better which would be great but if it doesn’t get better then at least I am able to be ok for myself and make the most out of my physio sessions.
What I wish I could do is to let my emotions out more. I felt a sense of relief after crying and letting it all out. I always thought this blog was my way of coping and making sense of everything that goes on with my health. I have some posts which I write that are kept secret which I want to be just for me so I can get it out but not for the public. The posts are not really constructive and more a jumble of my thoughts- or a more jumbled version of my thoughts.
Particularly in the UK we like to have that stiff upper lip and not show our emotions but this is not good for us. We need to show emotion otherwise we eat ourself up inside. It is not weakness so shed a tear. Particularly when we are living with chronic illness that in turn causes other conditions it is hard work. Life without illness is hard work, illness just adds to that work and it is work we cant leave in the office. It comes with us everyday, every night there is no relenting.
It is ok to cry wether it is publicly or privately you are not weak for crying. It can be cathartic and actually help unload some of the stress we feel which in turn can potentially mean our conditions can become easier to manage especially if stress if a trigger to cause conditions to flare up.
Recently I shared a link to a story my brother wrote. It was about me living my life with severe asthma. He is a journalist with the Daily Record and is doing some pieces on asthma, smoking on hospital sites (one of my hobby horses) and some other things.
(I apparently don’t have many photos of us together so this will have to do. Taking me off the ward when in hospital. I was lucky to get back to the ward alive with his driving of the hospital wheelchair!!)
I wanted to ask him a few questions (it turned out to literally be a few) on why he wanted to do a piece about me and my story of living with severe asthma. I am really proud of him for doing this especially as asthma is destroying so many peoples lives yet asthma is dismissed and not thought to be that serious by the majority of the population.
Below is his answers to my questions!
Why did you want to do the piece?
Without a doubt it was from seeing what you have gone through over the years, particularly in the last few when I have been around it more. It’s really not a well-understood condition from a layman’s point of view. People just think it’s ‘a bad cough’ or getting out of breathe when you play sport, but nobody sees the sinister way it can affect someone’s life.
Health stories are such a massive and important part of the media, particularly in how it can help activism and help push the conversation surrounding policy. I don’t think asthma gets the coverage it deserves. Talking to people who face a daily struggle with illness and putting their journeys in the public eye helps others open up and deal with their own conditions. But asthma suffers don’t have that voice like other illnesses like cancer or MS. Obviously as your annoying wee brother I have seen you at your best and worst with asthma, and it’s so inspiring. I wanted your journey to help others above all else.
On the other hand, it was so important to include the work you do behind the scenes for Asthma UK and other charities. Covering topics like correct techniques for taking medication and attitudes towards asthma help stimulate conversation, even on a day-to-day basis, from a light natter over Sunday lunch to discussions between health professionals.
How did covering the story affect your understanding of asthma?
Without a shadow of a doubt the amount of medication someone with severe asthma – and knock-on conditions – must take on a daily basis. I knew your asthma was bad through years of hospital visits and attacks, as well as using it to my advantage to beat you at golf (still not sorry). That hit home in a big way when you were placed on a ventilator recently – it was actually what prompted me to want to do the story. So I guess you could say that I knew how bad it could get before doing the piece, but only just before I sat down to write it.
But the medication routine was what really hit me hard. The sheer volume of treatments you have to take every single day was staggering, and shocked many of my colleagues. Knowing how you still get on with your life, throw yourself into activism and sport wherever you can, makes that even more staggering. To be taking 38 treatments daily at the age of 33 is mind blowing. I think getting that across to people really helps them to take it just as seriously as other, more talked about conditions
Getting a cold to many is an inconvenience. To a severe asthmatic getting a cold fills you with dread because generally our lungs are fantastic hosts to cold bugs leaving us with rip roaring chest infections.
During the winter months you cant avoid the common cold, well you could but that would mean you become a hermit and prisoner in your own home. Im not going to do that. I like being out and about too much.
The last two weeks have been pretty hard work. I picked up a common cold which filled me with dread. I think it filled my mum with dread as well especially as she was going away and this is the first time I have picked anything since that last horrific attack.
As with most asthmatics despite my best efforts it went to my chest. I had a great chest infection with an impressive cough that drove me round the bend. Even Ghillie was getting irritated with my constant coughing.
I wish I could say I dealt with this infection well but it has filled me with anxiety and I have not managed it as well as perhaps I may have in the past. I knew the first bout of illness post last attack was going to be hard. I had a fear that I would end up on that slippery slope back down to needing a ventilator. Extreme I know but could potentially be a possibility.
Thankfully staying in touch with my team I was able to keep it at bay and not get too bad. My peak flow has dropped significantly but the antibiotics and increase in steroids have helped bring it back up along with a lot of i still have this irrational fear that really hits me at night that my infection may not be better and I am missing something. Morning comes round and I think I am so silly for getting in such a state about it.
I have been doing less than I would normally do while I have had the infection. Mainly because I have been terrified of making my chest kick off. It has been a strange time because I thought I would be able to write some blog posts, do some other research stuff but I just have not had the imagination or concentration (lack of concentration is something I have been struggling a lot with post ICU).
I am also very happy that I have had my flu jab so my chances of getting flu are reduced. I would urge everyone to get it that can get it!
The good thing is, the infection is clearing well and my asthma has not kicked off too much. Ghillie of course has been very attentive and by my side all the time!
A phone call with author of Stumbling in Flats turned from working with pharma to writing in blog posts. A blogger for 13/14 years I have never thought about my blog posts and I have made it known that I just let my fingers do the work letting the words flow from brain to the page. I learnt some valuable information from that phone call.
A witty captive opening statement “Chocolate haunts me. Last night I dreamt a giant Jaffa Cake chased me down the road”
Im not sure I can do the witty part but I need to think about the opening statement. Something that draws people in and sets the scene of my post. I guess it is like basic story telling, a beginning a middle and an end. A story is only as good as its first sentence. If you don’t like it then you probably are not going to keep reading. A blog is just the same.
I also learnt that a post should be able to read stand alone and the reader will know what you are talking about and not need to read every blog post you have ever written to know who you are and what your story is!
A good about page is also essential. I must update mine ASAP. The fact that I cant remember when I last updated it means it needs updated urgently!!!
The last point was post length. Set a limit. 400-500 words is about right. There are some posts where I ramble on- often when I am trying to tell a story to get stuff off my chest or just to get something off my chest!! Strange to be saying that I write to get stuff off my chest when all my problems occur because of my chest!!!
Here’s hoping for some new and captivating blog posts that I can still get the same positive relief from personally and that people might read.
I started my blog because I was struggling to deal with the impact my asthma was having only life. This was a time when blogging was not such a big thing, social media was in its infancy and smart phones did not exist. As technology evolves so must we. Blogs have so much impact on people within the chronic health community and also those who are affected by it wether that be family, friends or even those working in the medical field. The one thing that is still the same to some extent is that I still blog to help myself deal with the impact asthma has on my life.
I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.
Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.
I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.
In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.
The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.
Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.
It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.
On the way back the airport experience was polar opposite until I reached the gate to board the plane.
Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.
I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.
I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.
The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.
After all of it I was so glad to get home and back in my own environment.
One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.
In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.
If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.
I am going to do a series of these blog posts. When I was last in hospital and immediately post discharge I was left feeling very frustrated and have continued to feel that way. I always feel like I cant quite say to the Dr’s and nurses what i want to. Not because they deliberately avoid it but they just don’t ask the question or there is not the right time to bring it up. While on the ward I started various letters that I wanted to write. One to my asthma, one to the nurses looking after me, one to the drs looking after me, one to my consultant and then one to my parents. I think the important ones are the ones to the people looking after me while in hospital and then the one to my consultant.
I am going to start with the letter to those looking after me in hospital.
(this is just a wish I could say. I know they are all doing their best etc so this is an ideal world)
To all the Dr’s,
First I want to Thank you all for saving my life on so many occasions. I really am truly grateful. The evil drugs you pump me full of, the numerous stabbings to get an arterial blood gas, or trying to find a vein for IV access I thank you. In the state of emergency when I am taken from my home by ambulance and rushed with sirens blaring and lights flashing to the nearest hospital where Drs are often waiting to take me into the resuscitation room to start saving my life and get my lungs back working how they should. At this point I cannot fault the Dr’s.
It is once things stabilise that I get frustrated with the Dr’s. Asthma is so complex often the smallest thing can trigger bronchospasm and when on the ward this happens all the time, a spray of deodorant, or flowers, or smoke carried in on clothes is all hazards that we cant avoid yet pose a huge threat to us. So often when this occurs and I have some nebulisers I get frustrated when reviewed by Drs who then say your numbers are ok just calm down. I want to scream at you at this point. I know my f**king numbers are ok but they won’t be soon and I am getting tired. I don’t want to be patronised I just want to know what is going on. What my chest sounds like, if the nebulisers are helping and making a difference to what you hear. I want you come to back once things have settled just so I know that I am not missing anything. So I know that I am stable and can rest easy over night.
Once things are more stable and I am looking for home I want someone to care and make sure that there is nothing I struggle with. So many times I have been discharged home not able to really cope, unable to walk independently, washing and dressing a struggle leaving me in my PJ’s all day. Often we get overlooked because we are young. It is assumed we will manage and not need any physio or occupational therapy support but we don’t always and often too embarrassed to ask for some help. At discharge from my last admission due to complications with my leg I was still needing help to stand up from the toilet, I couldn’t get myself up to the shower and shower without falling over. I didnt want to bring it up that I couldn’t do these things but may well have if i was asked about it. This goes along with mental health. My brain was a mess when I was discharged. All I wanted was someone to ask me if I was ok and how I was coping. It is so much easier to answer a question than bring up a subject.
Once home and then attending out patient clinic as a younger patient (which is really depressing when you are the youngest person by about 40 or 50 years) who lives with a chronic condition we just want to be asked what can be done to help us live life to the best we can despite our health. We want to live life and be able to go out for dinner and be spontaneous but we cant. When our condition becomes more complex it is so hard hearing that there is now more medications that can be tried and you are on the maximum medication that you can be. Hearing this is terrifying, we have our life ahead of us yet we have no more options in terms of treatment for our condition is a terrifying prospect. It is all about the language used.
I admire the work you do and the how you have saved my life but sometimes we just need that small question to check how we are and if we are good or not. It is hard work living with a daily routine revolving around medications and it can get too much especially when the side effects of medication cause more conditions yet you cant stop taking it. I am often scared of what is happening and what our life is like.
I would love to be able to spill all my views out to my Dr’s either while inpatient or outpatient but I never would be able to and I am sure so many others will feel the same.
I guess if there are any Dr’s reading this please thing about your patient and what might they be facing. Just because we are young does not mean we don’t need help. This is not meant to be Drs are bad but it is just some of the things I have come across and I really wish I could say something at the time but often there is no time.