In a special guest blog for PH Awareness Week, Carole Ayrton from Halifax wants to send an important message to other people with pulmonary hypertension.
My name is Carole and I have lived with PH for eight years. Little did I know when first diagnosed and given six weeks to live, without medication and specialist care, that I would be here today and living a good life with this condition. Life is hectic as we are in the final stages of a house build. Who would have believed we would be doing this when first hearing the terrible diagnosis?
I feel sure that when most of you were told you had this devastating condition you looked on the computer to read what Dr Google had to say about it. Of course, most of the data on there is outdated but if you were like me you feared the worst.
Eight years on and I have come to realise we are, to a degree, masters of our own destiny. A person with a disability is still a person, a worthwhile person. Many continue to hold down very worthwhile jobs and take care of a family. In essence, PH is NOT the death sentence it used to be. We have to have the belief in ourselves that we can live a full and satisfactory life with PH.
Our lives have to change, of course they do. Some of us find things we could do easily before PH raised its ugly head are totally outside of our grasp now, but we need then to look and see what we CAN do, and not concentrate on the things we cannot.
Sitting on the couch all day feeling lonely and sad because life has taken us down this path is not the answer. It does not change the diagnosis. This is where your family and friends can help you so much. It is important that because of having this disability we do not get left out of enjoyable things to do. Our family and friends need to remember that though we may not be able to do all we could before, we can still participate in lots of things, so if your loved one is suffering PH, please think of ways to include them in your life.
I bought a scooter so I could still go ‘walking’ with friends. This gets used less and less now that I have learned the importance of exercise but it does still get an airing on my bad PH days. I do not want to spend them in bed so my chair becomes my trusty steed to carry me off to the park or the shops.
I think that upon hearing the diagnosis we all feared the very worst; an early death. Fortunately, as things move on, new medications have been discovered to help us, so this is not the case for most of us anymore. However, whilst the doctors can give us the meds that are so necessary to us, it is vital to help ourselves also. We need to help our bodies make the most of each day.
For me I have a belief; a belief that I will be cured and that PH will not take me, so I do my very best to stay on top of the game. I take my meds religiously, I listen to all advice given by my specialists and take it all on board, never giving in. Of course, I have my bad PH days, I do not think it is possible for me to never have any. I also admit to sometimes doing too much, trying to prove to family and friends I am the person I was before PH.
Of course, I then come crashing down to earth with the realisation I am not. Something has changed within my body so the game simply has to be played differently. That does not make me a worse person, or a less worthwhile one; just one that has to accept the limitations PH has placed on me. I am still stubborn and am determined to fight this disease with every bone in my body.
Most of all, I think what keeps me going is the belief in myself and in my specialists. We make a great team and work together so I can make the most of this life whilst I await eagerly the day the cure is found for all of us.