20 years gone too soon.

Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.

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20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.

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The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.

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This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.

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Uncle Dermot with me and my younger brother.

I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.

dDcNhrJkRVaw4BiAiXXDxA.jpgFor a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.

Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.

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Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.

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(I love this photo of Granny aka Great Granny Annie proudly holding baby James)

I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!

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The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.

I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.

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Craigmillar Park Charity Golf Day 14th August

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On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

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For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

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The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

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I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

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(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

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I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

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Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.

Flashbacks of asthma attacks.

Recently I have found most nights I wake myself up having had a nightmare about previous asthma attacks. Nightmare might be the wrong word to use but then flashback is not quite right either. I recollect so vividly some of the scariest asthma attacks I have had. Many of which I have never really remembered much about until recently from having these weird dream type things. There are 4 different attacks which are reoccurring in my dreams so often. I keep waking up in a cold sweat, breathless and terrified as I relive those episodes.

A couple of the attacks I have written about but the other 2 I have not. I am going describe the attacks as perhaps by writing them down they will not haunt me in my dreams.

The first attack is from 10 years ago. I was out in Fernie, BC in Canada supposed to be having the time of my life. The whole trip was a little bit eventful from the start after getting a stress fracture in my shin but then things went smoothly until I got pneumonia. What started as a cold developed very quickly into a nasty infection. I first felt short of breath so had my nebuliser but this didnt help at all. The rep who was with the group of us was a local to Fernie so I was taken to the hospital. I got pretty ill very quickly. I deteriorated so quickly that I needed to go to intensive care but it was felt the intensive care was not specialised enough in Fernie which is a pretty small town so I was to go to intensive care in Calgary a 4 hour drive away. I was too sick to be put in an ambulance so the Air Ambulance was called and I was packed up and flew in a helicopter to Calgary. The trip was just under an hour I think. My two recollection of the trip was having really tight headphones on and someone talking to me all the time. The other thing was the sleeping bag type thing they put me in…it was like a bear hugger sort of thing and bright orange. I look back now and think that it must have been an amazing view flying over the mountain- but at the time that was the last thing on my mind. I only recall up to the point of arriving in what I assume was the rests department. I recall all these hands on me and faces leaning over me, terrified and all I wanted was my Dad. I do remember very clearly them calling him and he was put on loud speaker over the whole room. It felt like he was there in the room. After that I don’t remember anything until I was discharged from hospital. I wonder if dreaming more about this if more memories will come back to me from that experience. It is strange the small things you remember.

One of the other attacks I keep dreaming about is from when I was in Winchester. It seemed like just a normal attack. Took the normal trajectory, treated with the normal concoction of drugs and I was taken to the ward just as normal. I was in a  side room. I knew the staff well. One of the staff commented that I was unusually quiet. I recall the next thing was having a bag and mask on my face and being held down. I was then in ITU on Bipap trying my best to keep breathing. I keep recalling that the nurse looking after me had odd crocs on one orange and one purple which is the strangest thing to remember.

The other 2 attacks which I keep recalling in my dreams are both from times in Edinburgh and both when I was in ward 118 (Intensive Therapy Unit) in the Royal. These two have been a lot more vivid which I am trying to process myself so once i have I will write about them.

I felt lost as to why I was having these dreams/nightmares/flashbacks now and I think it is to do with some of the reading I have been doing recently of patient experiences and also about proposed research into severe asthma attacks. For as long as I an remember my coping mechanism for attacks has been to not remember. I don’t think I actively block it all out my mind but somehow I do perhaps in my subconscious. What I am remembering terrifies me and this is just a very select number of attacks. I have so many hospital admissions I have lost count and a lot I presume are pretty harrowing. The positive side of me hopes that by processing all this might mean I deal with attacks differently and cope with them better. I am not sure. Only time will tell.

Just now my breathing is pretty rubbish. Each day is a real struggle. Walking makes me feel like I have run up a flight of stairs only gaining light relief from my inhaler and heavily relying on my nebuliser to see me through. To keep this at bay I have turned everything up to full 40mg pred, lots of nebs, lots of PEP, physio, inhalers and pain control!!! Fingers crossed this will see it all through!

The isolation of chronic illness

Someone I follow on Instagram summed up exactly how I feel my asthma has made me. I used to be almost the opposite of myself. I always want to think that chronic illness does not define who I am but then this is not  true at all. I am my chronic illness and I have made myself that way particularly recently. I have been able to embrace having my asthma control my life and have put it too good use. I shave become involved in so much with the new applied research centre for asthma and also the work I do with Asthma UK. If I didnt have the difficult asthma I wouldn’t do any of this.

As much as I appear out going and have a laugh I am almost the polar opposite of who I used to be. 10 years ago I was the one who was out all the time, socialising with friends and had a carefree life. I would be out with friends and not care or worry about getting back to my flat to make sure I had medication etc. I would never hesitate about spending the night on a friends sofa if it was too late to go home. The thought of this now fills me with huge anxieties as I wouldn’t have my inhalers, pills and would worry about keeping people up with my coughing etc.

The app time hop I love to hate. I love it because it brings memories of a carefree life but then I hate t because it is not my life anymore and I envy that life. It would be fantastic to have such a life again.

The person I follow on Instagram I originally started following for the fitness and recipes they post but recently they shared about their friends. It is something I can relate with. Just now I spend a lot of time trying to keep myself well and out of hospital. In doing that it means friends come by the way side. Most of my friends I find I have met them through the work I do with Asthma UK or through support groups and therefore a lot of them are online. I have met them all just about but it means that you can’t just pop round and relax and watch a film, it usually means arranging Skype calls or FaceTime. These friends are ones who you can always rely on. They know exactly how you feel and the right things to say whereas the closest others friends come to knowing how you feel is when they have a cold and even then having a cold is nothing like fighting for your life to breathe!!

It is sad the way illness can change your life so much and leave you with so little control.

I often feel now that I live to work and thats about it. For just now I just want to throw myself into trying to make a change for people with asthma.

This week with my birthday it makes memories creep up and highlight all the bad things that comes with an unstable condition. Not only my birthday but I am also speaking tomorrow about asthma which is filling me with weird emotions as it is bringing up memories from some really hospital admissions. Last time I spoke in public about asthma I ended in tears and made a lot of the audience cry and I really don’t want the same to happen again!