Recently I've been getting very down again. Depressed, actually. My surviving daughter is 7 months old today and I've spent the last 15 weeks in hospital and have inevitably missed out on many of her 'firsts' and milestones. Herself and her twin sister were born on 2nd January 2016 at 28weeks+2days gestation but Ava-Grace passed away after 38hrs of life. Ava & Isla (my surviving daughter) weren't due until 23rd March so that date is essentially when they would've been newborn and would then begin hitting milestones, from then onwards anyway. I have been in hospital since the middle of April. In a nutshell and to make it less complicated to understand, had the twins been born full term on 23rd March and I'd gone in to hospital middle of April, I'd have given birth and then gone in to hospital 3weeks later and missed all milestones from then until now.
I guess I'm just tired of having to 'prove' how ill I am just so others can see. My gut stopped working a while ago and now I'm on TPN. However I now have to come off all of my pain medications just so that I can "prove" that it's the EDS that's caused it, not the use of opioid medication. This has in fact been tried several times before and to no avail - which I did point out - however it's not been tried before whilst I've been on TPN so again I am going to have to come off all of my pain medications just to prove a point. I have to once again be in unbearable, indescribably intense pain just for the benefit of somebody else. I have actually gotten to a point where I've asked if I could go back on my antidepressants but this isn't possible due to none being available in intravenous form.
When my pain gets too bad, my autonomic nervous system malfunctions which then causes seizures last anywhere between 5 minutes to 5 hours and sometimes days. So having to come off of my pain medication will then cause this to happen again. Apparently being on IV paracetamol and rectal diclofenac will help though (?!). If whilst I'm on Fentanyl and Morphine my pain can still some days get to a point where it will become uncontrollable and unbearable - resulting in seizures - then how on earth is paracetamol and dilofenac going to prevent it?! It won't - and from previous experience, DOESN'T - is the answer there.
I'm tired of being labelled a junkie, a hypochondriac and the likes of. I just want to get home to my daughter but putting me through all of this is just preventing that from happening. I know I won't be going home anytime soon anyway but all of this messing about with my medications is just going to further extend what has already been and will continue to be a very lengthy hospital admission.
Most of all, I'm tired of not being believed. Of having people say one thing to my face and then write another in my notes. I've had it happen more times than I can count and I tell you for nothing it damn well hurts. A lot of people experience a 'high' from some of the medications that I'm on (Fentanyl, Morphine and Cyclizine) and even though I benefit from these medications and most definitely do not feel any sort of 'high', I'm not believed. Everyone else seems to so I'm clearly lying just to stay on the medication and get my fix in the eyes of others. When I'm in pain I am told "well you don't look like you're in pain!" though I very much am. I don't enjoy being in hospital, nor do I enjoy the fact that by the age of 18 I was taking Fentanyl and Morphine regularly. It's not something I'm proud of! I would much rather be able to not have to take it just to get through the day but to be able to do this I would need a fully functioning healthy body - something I'll never have with multiple degenerative conditions.
I had a meeting this morning with my pain management team. They were asking what I would like to happen, and then telling me what was going to happen (to which I replied "Well why bother asking me what I want if you're just going to do whatever you want anyway. There's no point asking me these questions just to cover your own arse if you're asking if the patient had a say in their treatment when you're not listening to what I feel and doing whatever YOU want to anyway!). Literally to the point where when they left, the nurse from my Pain Management Team who I tend to get on with came in and - after jokingly saying "oh you're a swine! (because I'd kicked off) - asked me how I felt about the decisions that had been made. I told her I wasn't happy but hey what did that matter, I don't have a choice. To which she replied "Well no you're right, you don't" and so that was that.
In that meeting alone I learnt that EDS doesn't cause pain, Cyclizine is bad for you, I don't need my pain medications, my gut doesn't work because I'm on Fentanyl and Morphine so therefore are being taken off them and put on PR Diclofenac and IV Paracetamol, my seizures caused by my autonomic nervous system malfunctioning aren't real nor do they even exist (I've clearly imagined the times spent in hospital intubated in Resus then!), you can't possibly still feel sick when your gut is being bypassed and you're on TPN so it must be the opioids, not the EDS or the fact your GI system doesn't work.
Please note - the above paragraph are not my views, they are purely the views of a very unhelpful Pain Management Team.
Following that meeting I felt (and still do) deflated. Emotionally empty. I just sat there and thought to myself that I can genuinely see why people choose suicide over this life of pain and not being believed. The last 2 weeks or so I have finally gotten to a point where I felt so much better due to having proper nutrition (TPN) and my pain medications were working 80% of the time. I have even had enough strength to feed Isla when she's been bought in for visiting and pick her up rather than have her sat/lay against my legs and passing her back when she's due a feed. Now though, after the decisions made by my pain team and actions taken, this will go backwards and I will once again be in too much pain to even interact with my daughter. Not that they care, quality of life doesn't interest them and quite frankly they quite clearly couldn't give a shit about how that makes me feel.
If there is one thing that I can say that ALL patients with EDS want/need, it's to be believed. Yet that is the one thing which we have to fight and fight and continue to fight for. And that's just with one department. Whenever you're referred to another department you find yourself repeating everything all over again - several times - and fighting and fighting and continuing to fight to be believed once more. It's a never-ending cycle.
People need to realise that not believing us eventually weighs us down and kills any belief that we may have once had. It hurts. I firmly believe that not being believed plays a very big part in depression and suicide of EDS patients. After all, not being believed, being in intense pain, spending more time in hospital than you do at home and nobody being able to honestly reassure you that it won't always be this way and it'll get better eventually (it's degenerative, it gets worse) isn't much of a life to live. Heck, if it wasn't for my little girl surviving and beating the odds I will openly say that I would've done it a long time ago. I remember when Ava-Grace passed away I had said that if anything were to happen to Isla as well, I'd be off the nearest cliff to be with them both as this life wouldn't be worth it without them here with me.
Anyway, a nurse is here to change my TPN over now so I'll end that rant there for now and leave it at that.
- K. x
