Monday, 18 May 2015
Commenting on a post earlier, on a Facebook page I follow, has prompted me to write a (long overdue!) blog post. It isn't specifically to do with my leg or 'what happened to me' but I guess it is certainly related to the struggles many of us face day in day out, even though the details may be slightly different.
It is a support group for parents of children with a milk allergy. Someone was commenting that she felt disheartened that she didn't read many 'positive' experiences on the page and what ensued was a 'heated' discussion about people needing support and that they weren't being 'woe is me'. It prompted me to think about how far we've come despite the battles we still have to fight. I still can't believe some of the things we've been through since we began this journey over 12 years ago when Hope began to become ill. Tears, despair, paying for private Doctors, insomnia due to worry or later on due to a 3rd baby with severe reflux disease, who cried constantly on every car journey for months on end.
I write this on the eve of yet another hospital appointment (I don't exaggerate when I say the nursing staff in the Children's Outpatients Department recognise us, from as far back as the days it was at St James!). This time it is for Jack. He has been struggling on and off since Christmas with stomach pains. This peaked when he ended up in hospital at the beginning of March, when they ruled out appendicitis. He was then tested for coeliac disease (the Autoimmune Disease that me, Hope and Joe have) but this came back negative. Puzzling, as it would be the most reasonable explanation given the circumstances and symptoms.
I then fought for an urgent referral to the gastro paediatricians at Leeds General Infirmary. The GP referred him and he Immunologist dictated a referral letter whilst we sat with him. Why was I not surprised when we heard nothing?!! So, as usual, I chased it up and was told we would need to wait up to 18 weeks....urgent my eye! Then ensued the usual ringing around and questioning until they 'magicked' an appointment at the fast-track clinic. This still would be 11 weeks after the symptoms were their worst. Needless to saying made arrangements to attend this long-awaited appointment with him this coming Thursday, for them to call less than two weeks before as they were cancelling the clinic and told us to attend tomorrow...when I was supposed to be teaching....or go back on the waiting list.
I guess what I'm trying to say is that this is what we have to deal with day in day out, I doubt this will ever change. No, it's not the end of the world and yes, there are people far worse off than us but it can be stressful and draining at times. But when I wrote the post on the Facebook page (see it in the screenshot below) it made me realise that these struggles do pay off and it's easy to feel so negative and disheartened by these things. But we have come so far in dealing with their allergies and gastro issues in those 12 years. I think the memories will always be so vivid, of the long difficult days with a baby who screamed for about 18 hours a day. When I wasn't even able to have a conversation with my eldest two because every car journey, even the school run, was dominated by the screaming. And sometimes all of us ended up in tears when stuck in traffic. The nights spent pacing the floor with them in the sling (thank goodness for my fellow late night friends who I was able to talk to or message - they know who they are!), learning to eat breakfast, lunch and dinner with one of them in the sling (but remembering to put a sheet of kitchen roll on their heads so as not to get coleslaw in their curls!!) Breast feeding for over 2 years, whilst eating a dairy free diet (as well as gluten free) as that is what the Doctors recommended as best for our youngest. Amongst all this we both lost our Mums within 18 months of each other, both in extremely difficult and tragic circumstances.
My health is suffering, mostly due to overuse and stress. Jaw, elbow and hip problems, requiring surgery or unpleasant procedures at times. This certainly seems to come with the territory of being an above knee amputee. But in the last 18 months I have met 4 of the most lovely consultants who have been 'patching me up' and have begun to restore some of my faith in the medical profession. Not to mention the loyal physios who now know me well :) I have recently have had to start again with a new prosthetist, which I found very stressful. It surprised me but I guess our relationship is key to literally being able to go about daily life.
I think this IS life. Ups and downs, fights and sometimes progress and you just have to keep going, as no one else can do that for you.