Having an illness such as ours can often leave one without friends as some desert us due to their not understanding of our illness. Of course we can’t really be poorly can we as we look ok most times. We manage day to day activities though we do sometimes dare to moan how hard they are so what is the issue with us not wanting to go out at night dancing the night away or meeting for coffees etc. The issues are this illness is real and debilitating- some more than others. Most of us have had to struggle to even get diagnosed never mind living with this awful disease. For lots of us even managing the slightest day to day activity is way harder than most can imagine, I know as I have suffered this disease for 14 years. In fact July 21 is when I was first diagnosed though not treated for it in Spain. I remember the date well as it is my birthday. ( Happy birthday to me NOT).
I won’t go into my 14 years since diagnosis and since being sent to my A Team at Sheffield except to say I have been blessed with my care, my learning to cope with ph and gaining a new family, my ph family, Before being diagnosed I didn’t even own an iPad, had no idea of Facebook or groups etc. I had no real interest in technology ( still pretty rubbish to be honest) and never would I have believed I would find strength, understanding, a feeling of belonging and a warmth from people I have never met or likely to meet in my life. Once I joined ph groups to gain a deeper knowledge of my illness from those who KNEW ABSOLUTELY what I was talking about I never looked back, I quickly learnt that though of course we absolutely need our amazing ph teams a huge part of this journey is sharing it with those that suffer the same condition. Only these people know exactly how it feels to not be able to things from day to day.
I know almost each and every stage of this illness either through having it myself or talking to my ph family who suffer from it, Some of us do well with the meds so that we can almost function as well as somebody not having this BUT that is only because we take so many meds to help our bodies cope ( no we are not getting better, we are learning to be strong and to push ourselves way harder than most people will ever know just to survive) . We have learnt how to do this so well often some people find it hard to even believe we are poorly. Most of us have used way too many spoons some days so that we can join in with family and friends that the following day we are spent - our spoons are badly depleted and we need the few we have left just to survive another day whilst doing virtually nothing - being the blob in the chair as I call myself to on those days. If you have not read the Spoon Theory then check it out on Google. Written by an amazing person who herself suffers a debilitating illness and described using the spoons to get across how we manage our lives.
Anyway I digress as the reason I came to write this blog today is because of an accident i suffered a couple or three days ago. I tripped over a stone and fell heavily onto my right side. My fear was huge as I also suffer from severe osteoporosis and was told a year ago that a slight knock could break a bone. Whilst I know lots of people break bones this is a hidden scare for those of us suffering with ph. Our lungs are not functioning as well as most people and I know that I was told as a ph patient right at the beginning of my ph journey NOT to break bones - who actually chooses to do so - as anaesthetic is not our friend and an operation requiring this would be extremely dangerous. Of course when I hit the floor with an amazingly loud thud my first thought was gosh have I broken my hip, I have seen Colin cope with this and it was not something I would have relished at all. Fortunately I had not and I came out if it with just scrapes and badly bruised areas of my right side.
I posted on the ph page to my ph family what had happened and here it is where I was so proud to be part of an exclusive family. One nobody wishes to join as it means to become a part you either have this illness or a loved one does and you are coping with caring for them. Immediately my post went out lots of my ph family reached out to ask how I was and showed huge concern. This is what we do as a family. We do really care for each other as we follow one another’s journey navigating the maze of having this rare disease. This is a disease most people have never heard of and find it difficult to understand how hard it is to live with. However my ph family KNOW my fears, they KNOW exactly why I was so terrified. We care about each other so much and for me I am so proud to be part of your lives.
Through our ph pages we get insights into each others lives. We have a share in the ups and downs as we get on with living. Often we get a chance to share in the joys we read about in our ph families lives. New babies, our children gaining good results at school, marriages , how we are doing living with ph. We see some of our ph family able to walk their dogs again due to their meds and others just being able to join in activities that were taken from them before meds took effect and helped them. So many joys from so many and I am so thankful to be able to share in them. Of course with joy comes sorrow and we also see deaths of loved ones, break ups of relationships, sadness as this illness progresses and countless other things. As I experience all of these through other people lives that are part of this family it makes me so grateful for each and every one of you. I am so thankful we have these groups too as they are a huge source of information that helps tremendously when one suffers with a physical issue as many of us can recall going through the self same thing and can offer advice or comfort. This is a huge advantage to be able to ask the questions that most people can never understand as they have never experienced them.
From the bottom of my heart I want to say thank you all so much for being a part of my journey, for answering when I ask a question, for sharing with me the good and the bad and most of all for caring. Without each and everyone of you my life would be different. You have added a richness that means so much. Let’s continue to be strong for each other as we wait for the cure that will come.
Always remember there is strength in numbers. We have each others backs and the one thing about us all is we phight, we phight above and beyond what many others would struggle to quite grasp.
I will try to get this blog off shortly but there is much going on today. Wimbledon for tennis and England playing Spain in the football. I must admit I want to watch them both. I want Alcaraz to win in the tennis.
Enjoy your day and I send my very best wishes and hugs for each and everyone of you.
Carole xxxx
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