from rebellion to revved up: clare’s story.

When encouraging people towards living more active lives, I always try to stress that there is NO positive change that is “too small”!  I find people really minimize their accomplishments if they are starting slowly, and this is really unfortunate because small steps can lead to big change AND show others that anything is possible . . . and everybody has to start somewhere!

Today, my friend Clare from the UK [who uses all kinds of UKisms. I am a fan] shares her story of her journey with severe asthma and a downward spiral of negative choices with profound negative impact on her health . . . and her recovery.  Her recovery lead to the motivation she has found to keep moving forward with exercise following rehabilitation for steroid-induced myopathy [extreme muscle weakness/wasting]–her dog, Pip, and a marked improvement in her asthma!  Her journey began through walking: an activity that seems deceivingly simple . . . and has helped her go farther than she’d ever dreamed!

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clare%25201.jpgI have had asthma since I was small. I am now 27 and I’d love to say it hasn’t had an impact on my life at all but it’s basically dictated most of my life.

From a young age as well as asthma attacks I also had epileptic seizures frequently. I always had an inhaler on or around me and relatives also had inhalers kept at their houses for when I stayed. One of my earliest memories from childhood is not a happy one playing, it’s of me sitting in my buggy unable to breathe, my mum giving me ventolin syrup and yucky intal. Most memories seem to involve a time of fun times being cut short by an asthma attack or epileptic seizure. Apart from that I was quite a normal little girl!

I had lots of time off school. In my last year of primary school I had 6 months off school for repeated pneumonias and lung collapses that left me very ill in hospital. After that episode every cold or viral infection had me ending up in hospital. The attacks just got worse and worse, I began to need more and more drugs to control them and was often hooked up to IVS for a long time. At the age of 10 my consultant decided a home nebuliser was the only way forward. It didn’t help really just made me more reluctant to go to hospital. I could have nebulised steroids via it but that didn’t really help much. All through my teens it continued with me ending up in hospital every few weeks/months with a bad attack. My epileptic seizures had thankfully stopped so I was glad of a reprieve from them.

I just wanted to be like my friends and at the age of 15 rebelled big style. I tried smoking and would regularly get drunk on a school night and sometimes joined my friends in smoking weed staying out till all hours. I continued to have regular attacks, and in between my asthma never let up—I was constantly attached to my neb but hated to say I was feeling ill, so I’d wait until I could take no more before reluctantly asking my mum for help, I just hated the attention. One day just after I had started my last year in senior school I woke up having an attack, what was different was this one came on so quick, and within minutes of the ambulance crew arriving I was unconscious and had stopped breathing, my heart slowed down . . . if it wasn’t for the prompt action from the crew I’d probably gone into full cardiac arrest. When I woke up I was on a ventilator in ITU [editor’s note: this is what our friends across the pond call the intensive care unit].

I was in hospital for a month recovering, I was so scared at first to go home and that it would happen again that I kept making excuses not to go home, eventually they realised and I was able to talk through what had gone on and any worries I had. I wasn’t home long within 2 weeks I was back in hospital with a very bad attack that needed very high amounts of steroids, it lasted a long time and I was in bed for 2 weeks. That coupled with the high amount of steroids gave me steroid myopathy. I couldn’t walk at all it was quite scary, I went to get up after being in bed for so long and my legs just could not take my weight, they wouldn’t do what I wanted them to do. I had various neuro tests and finally an EMG revealed very weak and wasted muscles in my legs. I had intensive physio, at first I could only stand up straight using a special standing frame with the physio, we then after weeks of hard work moved on a rolator frame, basically a Zimmer frame. I couldn’t go home as we had too many stairs and I was too weak. I had missed so much school it was decided I’d fall back a year so whilst in hospital I started to attend a special school for people with problems. To cut a long story short I was in hospital for 6 months having physiotherapy. It was very strange being back home after so long! Due to the myopathy, for a while the doctors were reluctant to give me any oral steroids, if I needed them they would just hit me with tons of reliever and IV aminophylline.

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I finally left school aged 18, college wasn’t for me trying to be independent I moved out of home aged 19, I hated the fuss. I got a job as a care assistant, my long term goal was to become a nurse. I worked for 2 and a half years, struggling into work every day. I did have a bit of a reprieve from the life threatening attacks for about a year, no hospital admissions for a year! It didn’t last long, work understood when I was poorly I’d be off for quite some time. Then in February 2005 an attack that didn’t get better, all IV drugs failed I was getting worse they took me to ITU and I had to be put on a ventilator again. My family were told to prepare for the worst. After 10 days ventilated I pulled through, recovery was tough. I was in hospital for 6 weeks. I couldn’t return to work, just getting out of bed left me gasping for breath.

I got depressed not being able to work, I piled on the weight. The longer I was off the more scared I got, the more depressed I got, I lost all confidence and hated going out. I used a mobility scooter when I was brave enough to venture outside. Asthma did that to me! Still in and out of hospital the doctors didn’t know what to do with me. For 3 years I was a recluse, the safety of my flat was comforting. I stopped taking some of my medication, what was the point it didn’t seem to help. Around this time I also found Asthma UK, I thought I was alone in my suffering, suddenly I found all these people going through the same! In September 2008 I was in hospital on IV drugs so long and unable to get off them without getting poorly again, I was started on sub cutaneous Bricanyl. 4 months in hospital with 2 weeks at home. I was now attached to a syringe driver 24/7 but once I was home and had recovered for the first time in years I felt better!

My symptoms had improved; I could walk again without gasping for breath and needing a nebuliser. Feeling better I also sought help for my depression,

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finally revealing how down I felt. I was put on anti-depressants and within months I was slowly feeling like my normal happy self. I enrolled on an Open University course, went on a diet and started doing some gentle exercise. I got a dog and he helped me with my recovery. I had to go out to walk him! The walks got further and further, the weight was dropping off and I didn’t have a hospital admission for 9 months. Unfortunately a cold turned into a nasty attack whilst on holiday in Scotland, I was very poorly in ITU. I recovered quickly and was soon back to walking and losing weight.

2 years on I have lost 7 stone [editor’s note: 98 lbs! GO CLARE!] and have completed 2 open uni courses. It’s been over 6 years since I had to give up work and now I finally feel ready to get back out there! I’ve been told not to rush things, so I’m not. I am currently looking for work but have a voluntary job 2 days a week at my favourite charity, Asthma UK! I love it and am learning so much. It’s been a great way to ease me slowly back into the world of work. I exercise regularly now, I walk 3 miles every day and am constantly out and about doing something, a total opposite to my once reclusive self, who would sit and watch TV all day eating rubbish food hiding from the world. I don’t even have a TV any more—who needs one when there’s so much of the world to see and more interesting things going on! If I’m bored I’ll go for a walk. I love exercise now! I wouldn’t have said that a few years ago, I would do anything to avoid any form of it! I know my weight and lack of exercise didn’t help my asthma, I’m determined not to get like that again.

Thanks to the right treatment and regular exercise for the first time ever I feel like asthma is not dictating my life. I still require a large amount of medication and have daily symptoms my lung function is still only 60%, to some I might not appear controlled but for me this is the best I have ever felt. I have had some admissions but they are not as bad and I seem to recover more quickly. My last one was Christmas 2010. I had not been in hospital for 6 months and was on a roll, the week before Christmas I got a nasty chest infection and had to spend Christmas in hospital. Not the first time! And now I’m whole year out of hospital! A little lie there I had a brief admission to get off my subcut Bricanyl in August, which went very smoothly and I am now line free!

Who knows what the future holds but while I’m enjoying this spell of good health I’m determined to make the most of it!

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Thanks for sharing, Clare!

Clare’s story has also been featured in That’s Life! magazine.  Clare lives in the UK with her dog, Pip, and is studying Health and Social Care with the Open University.  She is a volunteer with Asthma UK, the UK’s leading non-profit benefiting people living with asthma.  Clare blogs at Clarebear’s World, sharing her story of getting back to work, fitness, school, asthma, fun stuff, and life!  You can also find her on Twitter.

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