My name is Glynn i was born in 1974 and I live with my parents in a City called Leicester which is located in the East Midlands part of the United Kingdom, i have suffered from a medical condition called Severe Asthma & Bronchitis & a Disease called ABPA (Allergic Broncho-Pulmonary Aspergillosis) which was renamed, Difficult Asthma about 3 yrs ago but is now put into the category of COPD Chronic Obstructive Pulmonary Disease both are managed using a mix of exercises and medication which work if you continue with them.
Over the years I’ve made mistakes and found it difficult to handle this health problem i suffer with, but I’ve tried to lead a normal life, Everyone I know is aware i have some problems my knowledge and skills in IT become my most useful asset and after leaving a Leicester special school in 1992 my chosen career was more than enough to last me a lifetime.
After Leave Western Park Open Air School I gained a place in further educational establishments from which i did my education for the next few years completing my qualifications in IT and NVQ Level 1 in Business Administrations.
Sadly during this time my health became more and more of a issue needing me to spend longer and longer in Hospital and more and more medication but i completed my chosen subjects and gained my qualifications. Only to destroy them many of these 13 years later, when depression set in at that time i felt i had nothing left my health had gotten the better of me and my mobility was at an all time low.
From a young age i was aware that my condition wouldn’t get any better and would maybe be the cause of my life ending therefore i try all the time to make sure i do my best always and give something back to people that have helped me in some way.
For the rest of my life I have to cope with this condition and all that goes with it, Hospitals have always been a part of my life the world famous Great Ormand Street Hospital was my second home from the age of 3 until the age of 19. My family and i would make 3 monthly visits by ambulance to London to learn about new medication and for me to go through regular breathing test to see if the condition was indeed progressing.
At the age of 19 my time with this hospital had ended and i was transferred to an “adult” hospital more local to me, something that a person like me wasn’t used to no more 1 to 1 support no more involving my parents in aspects of my now adult care. Now having to rely on me to get things right first time all the time.
I can tell you for a fact now I’ve made loads of mistakes some silly some seriously dangerous were I’ve forgotten to take medication or how to pick up the signs of infection which has meant I’ve risked my life to the extreme. My new adult hospital was Glenfield Hospital, Located in my own City a specialist respiratory hospital with all the research and specialist knowledge which would be able to treat my condition without any problems.
Since moving my care to Leicester my understanding is got better and my medication has been changed completely.
Over the years i’ve done some stupid things i’ve been taken for a fool and used for my kind heartedness but i’ve also learnt who my real friends are who to trust and who know to and how to deal with the total prats of the world. Get on my wrong side and you meet Mr Sarcastic get on my right side and you find someone who will help anyone and cares a great deal about other people.
My life isn’t simple or easy and recently i’ve started to learn to have fun and trust people again, Finding love would be nice but isn’t the be all and end all, Times have changed for me i’ve found new friend after losing most of my old friends to my outrageous behavier some years ago brought on by depression, that time in my life was the lowest i’ve ever been now days thought i’m doing my best to build bridges to apologies to people i might have messed up with if they can’t accept me now unfortunately their isn’t much i can do.. i just get up and move on, Life isn’t about always being top of the list life is about living to the best of your ability with what you have available to you.
Some years ago i took part in a pulmonary rehabilitation program at my local hospital a 8 week course of exercise, education twice a week at first it was really difficult the aim of the course isn’t to cure the condition you have but to help you better cope with any obstacle it will through at you over your lifetime.
My biggest obstacle is always mobility my limits for moving around when i’m unwell (which is every other month) is limited a never ending cycle of getting fit only to make myself unwell doing it then losing the fitness because of being unwell only to regain the fitness for a while once i’m well again, the rehabilitation program taught me to manage things differently therefore making my periods of ill health less frequent.
Thanks to Pulmonary Rehabilitation things have changed for me i’ve met loads of new people and become part of a team I really wanted to be part of while i was one the rehab program we had a Hospital volunteer who had actually been patient of the program themselves, this meant they understood how difficult the tasks we we’re being asked to do were.
The encouragement when times got hard because of chest infections meant i completed the course and became a more fitter and although it did not remove the fact that i have a long-term currently non-curable disease, it don’t mean i can’t try and be more mobile.
My confidence has grown over the years since completing the program i’ve become a UHL Volunteer working a few hours a week within the local hospitals where i know i can give something back to a service i rely on to keep me well, I work with some excellent people and enjoy every minute of it when days are bad it don’t matter because things are done at my pace.
I also provide support to patients of the program that i did myself something which makes me very proud, I know exactly how it feels to be so tired that you don’t think you can carry on only to find out that you actually can, i know what a bad day feels like what each drug is for and why its being used, My knowledge and skills provide me with some common ground which helps if a patient is nervous or unsure.
I love and care 100% i look after others before me i don’t find it easy to cope on my own with life i need someone to love me for me regardless of my past I’ve been looking all my life and still never found anything. And probably never will.
I run a daily blog which tries to show people how depression and anxiety effects my life, the hidden side of my world the part that no one see’s and the part I choose to keep hidden. The Who Cares 2018 blog started in 2018 and has been my enemy and my saviour sometimes, its a lonely world when their is no one available to chat when you can’t sleep or when the day isn’t busy sadly I forget that others have a LIFE and sadly I no longer have that! I have a existence and world where their are more people than me that know much more than me and are able to keep learning and keeping up to date with things.
I struggle with learning I find life easier if I can learn practically rather than through books, but I want to learn I have extensive knowledge or trusteeship and that of running charities and organisations as well as the disability world however my mental health isn’t great anymore.
Losing mum meant my world had gone and my achievements are now no longer recognised as my own doing its either “I was given it because they felt sorry for you” or “why do you need that, no one really wants you anywhere near them” “you are a no one you are nothing! you roan lives” its probable true most of it.. I used to have a reason to smile now I all I do is tend to look for a way to take the piss out of people or make myself a fool just so people get at laugh at my expense?