The cluster continues…

Let’s start on a positive note. Today, my son had a brand new experience, which he was quite pleased with, and happily told his grandparents about. He also painted a lovely picture at our local parent and toddler group, of a dinosaur.

Unfortunately, the new experience was sitting in an ambulance -which had been called for me, I hasten to add – and in all the chaos following that, I managed to forget to take the picture home with me (that’s not the end of the world, as I can pick it up another day, but still).

Today’s seizure was annoying because of where it happened and how it came on. I didn’t realise what was going on until it was too late and couldn’t tell anyone, and because of that, being in a public place, people were obligated to call an ambulance.

I was “out” for about seven minutes in all, plus or minus a minute or so because people didn’t realise what was happening at first and I’m going on their accounts. So, not good, but hardly the worst I’ve experienced either. By the time the paramedics arrived I was sitting up and consoling M, who was quite upset at being taken away from me for a while. (O, by the way, was more concerned with the fact that he was missing “song time” and that I wasn’t singing The Grand Old Duke of York with him. He regards my seizures much as I do – a bleeding nuisance.)

This afternoon I possibly had another, minor seizure – that or I was so worn out I fell asleep. Sometimes it’s hard for me to tell. I went up to bed for a lie down and came to a while later aware that time had passed without me, but I’m not sure what actually occurred. That sort of thing happens more often than you’d think. On the one hand, I was tired enough that “You fell asleep, idiot,” is the most likely explanation, but on the other hand, I’d been feeling rather aura-ish when I laid down, so who knows.

In other, better (I suppose), news, I got a phone call today to arrange my gall bladder removal. On the 9th July. So, you know, I got that 3/4 weeks noticed they promised me then. I have a pre-assessment appointment on Friday where I expect they will tell me what the removal of an organ will mean for me, and how many tiny scars I shall have afterwards. (Thank goodness it’s keyhole surgery!)

It’s caused a bit of a fluster, but I guess at least it will all be over sooner rather than later. Now I just need to make sure I’ll be able to get to the hospital and back. Fingers crossed, eh?

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An Open Letter – asking for help, really.

This is an open letter to, well, anyone who controls budgeting in the NHS really. I will be copying the bulk of it and posting it off to my local branch of PALS (the Patient Advice & Liason Service) and the board of trustees at my local hospital, but if you can think of anyone else who might be able to help (or think I need a major rewrite!), please let me know. Anyway. Here we go (blanked out the name of my local hospital and Neurologist as this is online, the names will of course be in the printed letter):

Dear Sir/Madam,

I am writing to complain about the Neurology services at my local hospital, specifically the continued absence of one of the consultants in the Neurology team and the lack of clinics which has resulted from this. I am sympathetic to the fact that Mr XX has been ill for over a year now, and understand that illness is not something which can be overcome immediately. However, the lack of a temporary or permanent replacement to the Neurology team means that I have not seen a consultant Neurologist since November 2009 – a period of 19 months.

I recently received my third appointment cancellation, which requested that I phone the hospital to rearrange my appointment once again. When I rang the neurology department I was advised that at present there were no clinics available for patients of Mr XX, as he remains on sick leave.

I have uncontrolled epilepsy, and my condition fluctuates from month to month. At the time of writing I have seizures that occur between daily and once or twice a fortnight, which causes a significant interruption to my life. My condition has worsened considerably since my last appointment with a consultant, and this is obviously something which I am desperate to discuss with a specialist, as it affects my ability to live a normal life.

I also have two young children, both below the age of four years, and as a result of the nature and frequency of my seizures, my partner has had to take on the role of full-time carer to supervise me whilst I am looking after them. This has obviously had a great and negative impact on our family as a whole.

I am writing, therefore, to request additional clinics to be held at my local hospital for neurology patients. I am aware that I am “not the only patient” in this position as I was informed when I registered my dissatisfaction with the situation with the appointments department, but as this means that presumably there are many other patients with neurological complaints that have not seen a consultant in well over a year, surely this warrants the funding of additional clinics to help those patients. Neurological complaints often require specialist attention, and can have a profound affect on the patients’ quality of life. They are also often very serious in nature and require constant monitoring. The interruption in my ongoing assessment and lack of access to the tests which only a consultant neurologist can refer me for has had a very negative effect upon myself and my immediate family, and will likely have had similar effects upon that of the numerous other patients who were also under Mr XX’s care.

I have sent a copy of this letter to the PALS, in the hope that they can direct me to an appropriate course of action to secure treatment for myself. Please understand that I appreciate the awkward situation the ongoing sickness of a colleague can present – I have been that colleague myself, more than once, when my condition worsened to the point that I could no longer work.

Yours sincerely,

J. Hill

Interruption

Well, today was…a pain in the backside, to be frank. The morning, at least.

I normally take O and M to various parent and toddler groups during the week, as a way of getting out of the house and giving W a break. He often walks us to them, and then meets me at the end, or not, depending on how I’m feeling. This has never been a problem. Apart from today, when I had a seizure in the middle of the session. Great.

I feel awful about it, really. I mean, I’m alright, the same as ever, but the people there were not expecting it, and I feel a bit rotten about adding to the existing chaos that is ever present around a collective of toddlers and babies. I was “out” for about four minutes apparently, though I’d put it at about half that, and fortunately I was both sitting on the floor out of sight of most of the children, and didn’t thrash about at all. There were also several pretty level-headed people there who looked after me, although they did call an ambulance even after I came around. Just to be safe, you know. I can’t blame them for that. Without knowing me well, it would be unsafe to take chances. It’s just a little frustrating because I was still groggy enough to go along with it, but there enough to know that it was really a bit of a waste of time. I now have another heap of paperwork to add to my ever expanding medical file.

The other thing that unnerved me was that I think this is the first time I’ve had a seizure with O and M around but no other close family. Poor M had to be looked after by someone who was a complete stranger to her, and by the time I was well enough to hold her again she was pretty upset. It took her a good five minutes cuddling me to really calm down. It’s times like that when I feel a rotten mother. She was still clingy when W arrived, although she did have a Daddy’s girl moment when she saw him.

I look to the future sometimes as a positive thing, especially on days like this, because I know that the problem of what to do with O and M when I have a seizure will lessen. O barely noticed that anything had happened as he was busy playing, and I know in a couple of years M will be the same. But at the same time, I’m fully aware that “the future” isn’t just a miraculous fix-all that will arrive and solve all our problems. New ones will arise, regularly, and I will still have to adapt and work around them. How will parents of other children feel about them coming to our house for tea should W be at work when he doesn’t need to be a full-time carer any more? How would the children themselves feel? What about the infamous wait at the playground; if I have a seizure when collecting O or M from school, pretty much everyone would see, and while that doesn’t bother me (I refuse to feel ashamed for having epilepsy), it might others.

There are other problems, I expect. I don’t really think about it too much, because when I do, like now, I start to worry about all sorts of things there is no sense losing sleep over. What will be will be. O isn’t at school yet, so there is no sense worrying about what happens when school-friends visit. Likewise the playground pick-up. Besides, W will have to remain my carer for some years yet, as today made readily apparent. In the short term, the group I was attending have asked to have a better action plan for the inevitable next time, so that they know exactly what they have to do. That will help considerably. Medium term? I plan on getting a medical bracelet. Still haven’t gotten around to that yet, but I really must.