This story is part of the Guts UK Pancreatitis Awareness Campaign.
In 2013 I suddenly started to slowly lose weight. Initially I was delighted, until I realised I had to get it looked into.
After a year of every test under the sun the pain began to kick in, until a trip to A&E discovered the cause of the pain, albeit not the real reason for it. The only positive thing was that at A&E they discovered a heart condition I didn’t know I had. After 2 years of in/out/in to hospital, they decided to remove my gall bladder even though the evidence of a gall bladder issue was not entirely there… some sludge but no stone. They had no other idea as to what to do as I’d been tested for everything else & I kept having to go into A&E.
Surgery was a big mistake. I suffered a biliary leak during keyhole surgery, had to be opened up and ‘washed out’ as they found that my liver had been nicked during the operation. The poison flooded my internal organs & irritated every organ. I have never known such pain. I had 3 drains in to remove the bile & my kidneys were suffering. I had to have blood transfusions & lots of meds pumped into me. The morphine was making me feel really really sick & I had to have a ng tube up my nose (which kept making me gag) to stop me taking bile into my lungs. That’s one Christmas I’ll never forget, but wish I could.
I suffer PTSD from the trauma of numerous agonising waits in A&E for pain relief, both to be administered & for it to work. I can remember, all too easily, on the trolley in A&E, in tremendous pain, I could see the medicine I needed, but it was under lock and key. On one of the many occasions I remember my husband urgently asking a senior member of staff from somewhere in the hospital to come into A&E &, I quote , ‘you hear that lady screaming, that is my wife, she needs pain relief please’ . I felt sorry for those on my ward & their visitors, on one particularly nasty day when I was moaning, crying & yelling at visiting time. My poor allocated nurse was in tears going round the hospital trying to find the doctor to come & give me an intramuscular morphine dose. I have 2 children so I do know what childbirth is like, at least in labour you know there is an end in sight & that you are being given as much pain relief as possible. In my circumstances, with pancreatic pain, a very similar pain, I wasn’t. Unfortunately a lot of my anxiety/depression etc stems from hospital failings, something I really don’t like to say as my husband works in the nhs so I know how tight their finances are & how hard they work. I have lobbied my MP twice on how much the nhs is stretched. It always seemed to be at the weekend that I’d be admitted, when they were short staffed.
Eventually they decided to equip me with sufficient meds to manage my flares, as best as possible, at home. Now I have litres of morphine available & I’m allowed to ‘hit it’ with a massive dose when a flare kicks off, unless I’m being so sick I need fluids & an IV. Sadly, once I’d begun to improve from this especially nasty time, I’d lost so much weight (about 25 kg) that when I went for some fresh air in the garden, I was so weak I fell over & broke my jaw in 3 places. I now have a metal plate & numerous screws in my jaw. On top of all this, I have epilepsy & I’m anaphylactic to all cox-1 inhibitors, aka ibuprofen/aspirin/voltarol & diclofenac, which having osteoarthritis & osteoporosis is hard to manage without.
To try to look on the bright side, falling & breaking my jaw meant that my osteoporosis was diagnosed. I shouldn’t be taking opioids because of my epilepsy & opiates’ effects upon the brain, but with only paracetamol that I can take, when I have a pancreas flare I have to risk it… an added worry. Every day I worry about a potential flare, especially if I’m out & about, not able to cope with the pain & frightened, or alone. I now live on creon & lots of anti sickness meds on top of all the others I have to take for epilepsy etc. The outcome of all this was I was elbowed out of the job of 18 years that I loved, due to my sickness record. There was a ‘case to answer’ but I didn’t think I could cope with the stress of taking it further. I soon found out who my real friends were. Not that I want to see them anyway as after 18 years, those friends bring back my PTSD. I feel that I’ve lost my identity as if I meet someone new, the first thing that is generally said is ‘what do you do’ & that my career, & pride in it, meant nothing as it finished so unpleasantly. I now have to have benefits as I’m too unreliable to get work, as if I don’t have a flare, invariably my arthritis decides to cause me a problem. I can’t even offer to look after my grandchildren alone as I’m not reliable & may let the parents down at short notice.
Support groups on Facebook have been amazing, as no one quite understands pancreatitis unless they’ve got it too. The same applies to the arthritis groups. Both pancreatitis & arthritis are invisible illnesses, so are often misunderstood. It’s catch 22 in that we smile & put on a brave face when in reality we’re feeling terrible or hurting, but to be how we feel, daily, would actually make us feel worse. At times I can’t pretend & then I turn to those support groups as I can’t lean on my family day after day after day. The 2 things in my life that make life bearable is my family & singing, the rock type, in a choir. Though I have tough times with my health & often feel really down, on the whole I can manage to sing. We even recorded a song at Abbey Road where the Beatles recorded all their songs. A very good day to remember when I’m feeling really really down. I’m hoping, fingers crossed, that pancreatitis & arthritis will allow me to perform at our future Big Gigs…