Living with a long term condition

What an end to 2013, I developed a chest infection on Christmas day, what a lovely Christmas present that was. Fortunately the Doctor had done as the hospital had requested and gave me an emergency supply of antibiotics and steroids so I was able to start them right away. I think it was probably due to stress as my children decided to suddenly move back home(after 10 years for my son and 15 years for my daughter). They brought with them 4 dogs! BIG MISTAKE!!!!!! Hence I ended up unwell. They did manage to rehome 2 of the dogs really quickly and after a few days managed to private let a house so all was well for a couple of weeks. Then they decided to have huge arguments and fall out, now my son is back home again, hopefully not for long. Don’t get me wrong I love them both, I just need my own space and time to chill out. It’s amazing how you get used to having time to do as you please when you please.
However enough of the rant, I hope everyone has had a Happy Christmas and a good New year.
My new year resolution is to get back to swimming and try to loss some weight.

living with a long term condition, update

I have had a couple of good weeks recently, here’s hoping it will continue. It definitely pays to plan and pace.
On Friday I went out to dinner with ‘old’ colleagues from the nursery. We went to Romeo & Juliet’s, it’s a restaurant in Dalry, not far from where I live. It was a good meal and great company, it was great to catch up with everyone. I was tired the following day and so had a couple of hours sleep in the afternoon as I was out again on the Saturday. I was going next door to my sister’s as she was cooking dinner for me as it was my birthday. We had a good food and a good night. Now for a few relaxing days before the made rush of Christmas.

Living with a long term condition

16/10/13
Update
Living with a long term condition means I have good days and bad days, I just learn to take each one as it comes. I have had quite a few bad days recently. Unfortunately we are entering the worst time of year, Autumn and winter.
Today I feel really tiered and have done since Monday. Just to add to that I have toothache. Anyway lets try to focus on something good. I have an award ceremony to go to next month, so hopefully I will be well for that.

26/11/13
update
I have had a few tough weeks recently as I have fought off a couple of head colds, a chest infection and had a medical at ATOS. My body feels so tired and so sore I feel as if I have been beaten up. I was so tense and anxious about the medical and having to wait for an hour and a half before being seen did not help. However the lady I saw was really nice and did seem sympathetic. I just need to wait for the outcome now.
I did make the award ceremony and had a good afternoon even if though I pushed myself a bit too far by walking into the hospital lecture theatre, I was exhausted. Carol, Jackie and Linda were a great support and arranged for a wheelchair to take me to the conservatory for tea and to take me out to the car. Many thanks to you all.

Living with a long term condition

Hi, my name is Mary and I would like to tell you a bit about myself.

My life is completely different from 6 years ago, when I was managing a nursery full time, and doing a job that I loved.  It is also completely different from how it was 5 years ago, when I really thought I wouldn’t see the end of the year.  I want to share my story about how I moved from a diagnosis of COPD, through being blue-lighted in an ambulance to hospital, to pulmonary rehabilitation and the life I have now. If it can inspire even small changes in services or hopes in people with my condition, I will be happy.

I am 53 years and I am happy and lucky to be alive. Why do I say this? It is because I believe that if I had not been referred to Pulmonary Rehabilitation I would not have survived. As a child of 14years old I was diagnosed with Asthma and have lived with the condition since. I have had various attacks throughout my life some minor some major. It was the major one in 2008 which almost took my life. I struggle to regain my strength and my self confidence back until I was referred to Jenny for Pulmonary Rehabilitation.  At first I struggled even with the simplest of exercises that Jenny gave me, however with gentle and sustained encouragement I began very slowly to regain a little of my strength.

I had been having continuous chest infections t to see my G.P. for the result he very casually said “Oh I see your C.O.P.D. has got a little worse”. I was shocked I had never heard of this and asked what he meant. He told me to see the practice nurse she would  give me a booklet on it. I was shocked a frightened by the booklet and the casual way the G.P. & practice nurse handled it. The booklet I was given has a picture of someone on an oxygen mask and my first thought was “I’M going to die”. I then looked it up on the internet. That was full on scary information and did not help to alleviate the fear in me. There was so much information I was unsure how much of it was relevant to me. I then made a new appointment to talk to my G.P. about it and he told me that it was nothing to worry about I was not going to die. He told me it was a degenerative disease and was due to the constant colds, chest infections and asthma attacks that I had had over my lifetime.

In September 2008 I was at the nursery, I had a heavy cold and was little wheezy, my boss advised me to call the surgery immediately and ask to be seen right away. The receptionist did give me an appointment for 10 minutes time, enough time for me to get across to the surgery. I was seen right away. (I was feeling much worse now) The Doctor without any examination said he would get me onto the nebuliser.  After nebulising me he examined me and said I needed to have another dose this time with oxygen. The nebuliser did not help and I was getting worse before his eyes. He then said I was going into hospital, a nurse stayed with me as he arranged this and called my boss (Helen) to come over. (She told me a few months ago that she knew then that I would not return to work (it took me a year to accept I was unable to return to work) and she was unsure if I would even return home, I looked and sounded so ill). I was rushed to hospital still on the nebuliser with oxygen. I was taken to Resus, where they fought to save my life as my respiratory system was shutting down. I survived due to the great work of the hospital staff however it did leave me wiped out mentally and physically. When I returned home I was frightened to do anything as I got breathless as soon as I moved, so I stopped doing anything except getting up to go to the toilet and that exhausted me. It was not until I was referred to Jenny at Pulmonary Rehabilitation that I began to get some strength back. It was a slow process but I got there with those magic phrases “take baby steps” “break things into doable chunks”. My thanks to Jenny and her team for saving my life, she says I did all the work, but if she had not been there to guide and encourage me I do not think I would have been able to fight it myself. Once I had completed the course of pulmonary rehab Jenny asked me if I would be interested in helping other people with similar conditions. I did not think I would be able to help anyone as I had almost given up before meeting Jenny however Jenny knew I was the right person and gave me a folder to have look at. This is how I became involved with the Self Management Programme. I agreed to do the training and I became a Self Management Lay Tutor and worked with Carol to deliver a few of these courses to people with similar conditions. I shared my experiences with them and they shared their experiences. Together we helped each other and I must admit I enjoyed myself.  I was getting my old self back.

It is always going to be a battle but I am more confident now that I can fight it, I just have to remember to take baby steps every day.