Having a chronic illness or long term condition usually comes with the need to have many hospital and doctors appointments. You can sometimes get to know the staff so well that they know its you on the phone before you identify yourself, and treat you like a friend when you walk into the surgery etc. But often, as I’ve discussed before, these appointments can be the metaphoric double edged sword. They can be productive, or they can be a complete waste of time. But even more than that they can at times get to the stage where you simply wish that you could never see another hospital or doctor as long as you live and wish that you could get the help you need without going through all of the other bits. Simply put you get Medical Overload!! Or I do!
In a way I’ve got to that stage again at the moment. Although I’m trying to limit my appointments to one a week at most, I’ve gone through the last few months with very few weeks without an appointment in it. A few of these appointments have been productive, but a lot of them have been a colossal waste of time. I have, in the past, been to appointments where the specialist has started the appointment by telling me that I’m wasting their time (hand on heart, honest truth) and others where their first statement is that they’ve never heard of Ehlers-Danlos syndrome and then your heart sinks. When you are up against this, or you have experience of this just going to appointments take a lot of courage. I have been told that I should have my head examined because I’m making things up, but this is one of the main reasons that I have a big fear about going to doctors and hospitals especially to see specialists that I don’t know! An appointment for me is tiring. It consists of a number of steps, which to some people will seem like I’m just making too much of them, but to me are just what I have to do and what I do go through. I get an appointment through, if this is via phone then obviously I have that stress (see other post about phone phobia), but even if it’s not I have to look to see what appointments I’ve got nearby. Which hospital is it for, is it for the closer one so mum can take me or is it for one I have to have one of my carers take me to? If it’s a carer one then have I got any carer hours left or will I have to cancel it, have I got any other long ones coming up that are more important and will need those hours for? If it’s a new consultant or a new speciality that I’m seeing then it’s a stressful time because my fears become almost overwhelming, wondering if this will be a good appointment or bad, will I get help or yet again be left to my own devices to sort myself out? I then, on the day, have to be super organised. I have all my medical letters and forms in separate files, I have ones for different hospitals and when I have regular appointments with the same consultant for a long time I have a dedicated file for that one too. If I don’t do this then with my brain fog and anxiety I can forget everything when arriving at hospital including who or what I’m there to see someone about, which is upsetting for me. I also have to make sure I have fiddle toys and things to distract me while I’m waiting. When I arrive at the hospital if I’m being driven it’s a stress as to whether there will be disabled parking free for me, if not where will we park? Then it’s where is the appointment in the hospital, do I have to use the lift (which is a massive trigger for my anxiety having never liked lifts when I was able bodied, I like them even less now especially if there are other people in them) will there be somewhere for me to wait or will I be in the middle on display or in everyone’s way? These may seem like trivial things but they all weigh heavily on my mind. Then is the stress of the wait, if my sensory side is rearing then I may even go into overload. So you can see that then if the appointment is a waste of time or I don’t achieve what I need to then I have been through all of this for nothing. It’s exhausting too, all of the stress and just the physical exertion of sitting in my wheelchair for a longer time and the heat setting my POTS off. I end up exhausted and the effects last for days after. So every wasted appointment is yet another blow, because it’s not just the time taken for the appointment it’s the times before during and after that is a problem for me.
So this past few months I have been to various specialists and under various specialties and a good number of these have been a waste of time. I think the one of these that has been the biggest upset was hand therapy. I’ve been under hand therapy for a long time now, seeing my local one up until last year when she left. There has been a protracted time of finding who was going to take over from her, and a number of appointments trying to find who I should see. The latest found me at the only hand therapy centre in the whole county, which was 40 minutes drive away!!! Not the local hospitals, not even the walk in centre or the hospital with our nearest A&E department but another one. The car park is a nightmare with only a handful of disabled parking spaces and the hospital itself is a very old, very dark dingy one. The hand therapist herself was a really lovely girl, however the biggest thing that I need is splints. I am waiting for surgery, there is little in the way of physio or therapy left to do on my hands and fingers until the surgery can be done…..and this cannot be done until I can use a wheelchair full time to give them time to heal after the surgery, or the surgery will not work. However this hospital doesn’t give out more than one splint to any person, and doesn’t stock the type that I need so I don’t even get that one allocated one. I need two splints for each hand as mine are currently falling to bits (lasting usually for 6 months and these have had to last now for over a year) and I also need new night time ones so one for each hand. When they said that they didn’t stock them they did have the brochure with the types that I needed and photocopied the page for me (for the day ones at least) but on researching them when I got home I found that these are going to cost me £35 each. Now I know that some will think that these prices would have to be found by the NHS if I got them from them, but they pay for them at a fraction of the price, the price that these are for me are retail. I can’t afford even one new set. So in other words I cannot afford the things that I NEED for my condition, to manage my condition until I can have the surgery that I cannot have because I cannot use a wheelchair full time. When I say that my current splints are falling apart this is no exaggeration either, they are literally coming apart at the seams. So I’m now stuck between a rock and a hard place!! I cannot say how I will rectify this, or even if I will. I will be making do until I can sort something out, but how and when I will do this I just have no idea!!
So onto my operation. After having been given the moved up date I went to the hospital for pre-ops a couple of weeks ago. Unfortunately my conditions being what they are worried the nurses, well a resting heart rate of 144 will do that!! What then followed was a week of phone calls (yes panic setting in each time) where she was asking me question after question and my anxiety was rising with each call thinking that they were going to be phoning to cancel and tell me that I couldn’t have my catheter at all. Thankfully after what I think was phone call 8, I was given the go-ahead. I am going in on this Friday the 22nd and will have to be in at least overnight to be monitored. Keep your fingers crossed for me!!
I hope that I have given you a little insight into the stresses that I go through with an appointment? I have got a number of things to keep me going while in hospital, I have a couple of puzzle books and a new audio book. I also will have fiddle toys and maybe some music too. What do you think? Do you have anything that you take with you to appointments to keep you calm? What about hospital stays, do you have anything that makes these stays seem a little less stressful? Let me know, I will hopefully post this once I’ve added a couple of photos so I hope that it’s not after I’ve been in before I can post it!! I’ll keep you up to date if I can too about my stay and hopefully what follows!!!