If I didn’t know what frustration was prior to the past fortnight, I most certainly do now. When you’re relying on hospitals and the NHS for so much, as I do, it’s hard to appreciate the sheer enormity of the organisation, the amount of people they deal with and that to them, my case is no more important than the next persons. My ultimate goal, to get back to uni, is the only thing left which encourages me to make the constant phone calls and emails to move my care forward.
As I mentioned in a previous post, the majority of my EDS care is being moved to UCLH. Whilst it won’t happen overnight, this will hopefully result in more co-ordinated care with everything ‘under one roof’ and a team who can work together. One of the things that UCLH were going to take care of was my ileostomy, which initially was planned to be done at The Royal London. After three months of phoning The Royal London to chase up the clinic letter and my appointment with the stoma nurses, it has come to light that my notes and the dictated letter were apparently lost in the NHS cyber attack, and the consultant claims he has no recollection of my consultation. To say this was frustrating would be an understatement; since my appointment in April I thought I was three months along on the waiting list by now, and it turns out I wasn’t even put on it! Waiting for another appointment at The Royal London seemed like a waste of the next few months, and so with confirmation from the consultant there that the situation of not even being on the list was indeed the case, I have decided the best thing to do will be to allow UCLH to coordinate my care, and see what the team of numerous specialities feel would be best for me.
A multidisciplinary team has been set up at UCLH, and they met a couple of weeks ago to discuss the procedures such as my port replacement, the ileostomy and formation of a PEG; I am yet to recieve the report of decisions made but I hope however things move forward there will be successful intervention to stabilise my condition and improve my quality of life from what it is now. More than enough tears have been shed over the past few weeks – to put the frustration into words is almost impossible. I’m so beholden to hospitals and medical professionals, and I have next to no power in getting things done. A complaint to PALS may at least make me feel like there is closure on the situation, but it won’t get the past three months of waiting for nothing back.
My dislocations have been getting more frequent, particularly my right knee which has been so problematic. I had an MRI on it, which showed that my kneecap is at a complete slant where my tendons are not strong enough to pull my knee-cap back into the place where it should be. The angle at which my knee is results in it being weaker and so more prone to dislocating, so I’m in a vicious cycle with it. I’ve been referred to Guy’s hospital to a surgeon specialising in issues such as mine, who will consider operating on it. I’m open to any suggestions he may have, although I was told at a local hospital that surgery may only provide around a year of relief until the tendons have stretched again and the problem will return. The other worry I have is that, as with all my operations, I’m often classed as too ‘high risk’; I have a condition that needs surgery to help aspects of it, but the condition makes me too risky to have the operations… I can’t win!
Even more challenging than the physical symptoms I find are the mental implications of having conditions such as mine. Living day in, day out with things such as catheterising, irrigation, requiring wheelchairs, dislocations and taking numerous medications is so hard. Whilst my anti-depressants have been increased the benefit is limited, and I would do anything to have a sense of ‘normality’ back in my life; to do simple things that people take for granted everyday such as walking, getting out myself and having independence is what I long for more than anything. In the middle of the frustration, upset and depression that I am currently experiencing it is hard to remember that I should be grateful for what I do have, in particular my family who I would be nobody without. Jeffrey’s cheekiness also brings light and laughter to even the darkest of days and I couldn’t imagine life without him.