What do you do when you have a bad or good travelling experience when you have a disability?

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.

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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.

It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.

2nd dose of Mepolizumab in the bag

Thats the second dose of mepolizumab done and dusted. Now to wait till next month for my next injection next month.

So many people have been asking me how I feel and if the new drug is helping or making a difference, or ask me when I will start noticing the benefits. Its really hard to tell. I am feeling some positive effects from it I think and there have been a few side effects but nothing major.

The most telling sign is that I have noticed my peak flow has been increasing and I have not been in my red zone since the 19th September. That is a full 10 days. It may not seem like a great achievement and many will not agree with me for being excited that I have gone ten days and not dropped my peak flow but the nature of my asthma has meant that my peak flow is all over the place and so has my control been. I must say my asthma control has not been poor through my own choice and I have tried desperately hard to keep it n control. I have not managed to get into my green zone since June but I am happy with that. Better to be stable and sitting in my amber zone stable than jumping up and down with readings all over the place. I think slow and steady is the way to improve….it has after all only taken 14 plus years to get to this point.

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Other than looking at peak flow results and keeping track of how much salbutamol (both nebuliser and inhaler) I am using how do I actually feel? DoI feel different?? It is hard to say. My prednisolone dose has not been reduced and has been kept at the same dose since I was discharged from hospital in April. I am finding it hard to identify if feeling well and pretty stable is because of the steroids or due to the introduction of the mepolizumab. Once I have my 3rd injection I am hoping my consultant sticks with his plan and we can start the slow process of reducing the prednisolone. I am aware I won’t get off it (or may get off it and converted to hydrocortisone due to adrenal failure) but lower will suit me just fine.

Since starting the mepo I have not been to bad with side effects. After the first I had a bad headache the first time but the second dose was not as bad. A bit of a sore head but nothing to major. The one thing I have noticed and I am not sure if it is coincidence or what but I have been waking up in the morning feeling like I am drowning or choking on the amount of phlegm I have on my chest. I have always had a bit of a productive chest- it goes with the territory of having lung disease but this is different. I am still not sleeping super well but I am wondering if that because I am sleeping slightly better and not waking up so much the phlegm is building up rather than me waking having a cough moving all the stuff and then settling back down. I guess the good thing is that all the movement of phlegm means I (fingers crossed) won’t be as susceptible to a chest infection and may notice them quicker as everything is moving so will see the colour changes. Although this is good that I am moving stuff in my chest I find in the morning I am having to do more saline nebulisers and a lot of physio to move it and it has often made me sick because of it. This is a minor price to pay though in terms of side effects.

With this medication as I have said before I won’t see improvements over night but will over time and I think I am starting to see them. The other thing I have noticed and finding it more and more is that people are telling me how well I look and don’t sound as bad which is probably the best part. The past 3 weekends have been jam packed full of different things- mainly lacrosse and by the end of each weekend I have been on my knees longing for my bed but I have managed them. I have managed to spend these weekends on the side lines of a lacrosse field, or in the middle of a lacrosse field coaching  with either Edinburgh Uni or Scotland (Scotland is just goalkeepers and assistant manager). A lie in over a weekend would be lovely and in the past weekends have been all about recovering and getting myself prepared for the next week of work but I have been able to use these weekends to do what I love and not suffer at work. Don’t get me wrong it was so hard to get up on Monday but I think most people find it hard to get up on a Monday morning for work so being what I called “normal” person tired is awesome.

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One thing I am very thankful for is having people around me who can keep me grounded and don’t let me get ahead of myself. I have always been someone who will try and do the long distance run before I can jog let alone walk so even though I may get grumpy at people holding me back I do appreciate it. Coach Dave at Scotland Lacrosse knows when to reign me in and make sure I just take it easy and ensures I just walk or rest when I perhaps am going full steam.

I have an excitement in my life just now something that I have not had in a long time. I look forward to being able to plan things in advance and not worry that I may need to cancel or not be well enough to attend. I am aware that there will still be times when my lungs just stop me from doing what I want but through this I have also learnt to appreciate life, not take it for granted and just live for the moment.

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