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Next Tuesday (1st November) or last Tuesday by the time you read this, is my birthday and this year I am feeling the most un-birthday-ish, I have in years. I just can’t get excited about it, nor my husband’s the following day. I have bought and wrapped all his presents, I am looking forward to giving him his presents but if we could just gloss over mine I would be more than happy.
Saying that though I have been incredibly irritated when hubby has tried to open my cards (that have arrived by post) at the same time as his. I have also banned the cards that have arrived being put up on display before the day. Hubby has a dreadful habit of opening everything on the lead up to our birthdays and this year this has got on my very last nerve. I have so little this year to look forward to, that I have decided none of my cards will be opened until the day. I have no problem with him opening the post the rest of the year but my birthday cards are just that mine.
There are a lot of things happening on the lead up to the big day, at the weekend hubby is going out with his friends, so I have a really good friend coming to spend Sunday into Monday with me. Up until now I have been pretty excited by it, we have been planning it for months but now I am filled with anxiety that she won’t enjoy herself or that I will be ill (well sicker than normal) and she will end up changing her role from great friend to carer. Something I hate because it will mean yet again chronic illness has taken over a day that should be fun.
On the 31st October I am heading to Plymouth for my caffeine infusion and meeting up with my oldest friend Sharon, who I have known since we were 8 years old. I can’t thank her enough for spending her free time with me in hospital (a place we both loathe) so that we can catch up. I am looking forward to seeing her as I haven’t seen her for about ten weeks. We have gone years and years before without seeing each other but now because I have seen her on a more regular basis, the hospital visits just aren’t the same when she isn’t there. I also have to thank her for being my photographer when I had my occipital nerve block injections back in September. She admitted to me afterwards that she had almost passed out when she saw how far the needle went in!
Maybe I have my husband to thank for me not feeling particularly birthday -ish after all the muppet did book me in for my first dentist appointment in 3 years on my birthday…..Even the receptionist questioned his wisdom at the time of him doing this. I have been quietly seething ever since as I have a rabid fear of dentists and I know my teeth are quite a mess thanks to EDS.
Most people (other than Dentists) have no clue about the damage EDS can do to the teeth. I am rapidly losing the enamel from my two front teeth, so the base of them is very thin and over the last three years bits of them have chipped off. Also the braces I wore as a teenager have left pits in my teeth, I was lucky enough to wear the old train track style braces top and bottom. Where the brace was cemented to my teeth it has left holes that rapidly became gaping pits in 2013. My dentist at the time filled the holes and they looked great for a while but now, due to copious amounts of coffee (due to my CSF leak, caffeine increases cerebrospinal fluid production) and fags (I seem to smoke more when I am in a lot of pain, when I can get out of bed to smoke at the back door) these “fillings” have become stained and I hate looking at my teeth.
I know I am going to be in for a painful session and will probably have to return quite quickly for more work. I think I need a couple of fillings too which will be an adventure as due to dysautonomia I need adrenaline free injections or I will pass out on standing. I also need a Dentist who works quickly as due to EDS affecting the local anesthetic. I tend to burn through the stuff very quickly and due to my extremely low pain threshold when it comes to my mouth (everywhere else it’s high). So as you can probably imagine I am less than thrilled with the prospect of attending one of my least favourite places on my birthday!
In my husbands defence I did say to him accept the first appointment they have………...maybe I should have given it a bit more thought.
The 1st of November would have been used by me as a crash day. Not that I book them in but I know from experience the day after the trip to Plymouth for a caffeine infusion I am fit for nothing and can barely move. The trip to Tavistock for my neurology appointment landed me in bed from the minute we returned until the Friday (28th October). I was just so tired that I couldn’t function, I kept dropping things, my eyesight was blurred and I had double vision. The pain in my legs and spine from sitting for so long meant all I could do was lie down as my normal painkillers weren’t touching it. I am expecting all of this on Tuesday along with a trip to the dentist. Wednesday 2nd November hubby's birthday is going to be a total washout. It’s just as well hubby is on holiday that week, as my capabilities are going to be severely restricted.
I don’t know if my lack of birthday excitement is also being caused by the fact for the first time in years we won’t be holding a party. Since our 40th birthday we have held two parties a year. This year however we have had to cancel them all, as I am just no longer well enough to have 15 plus people in the house and all the stress that goes along with putting on a do. I hate what this CSF Leak has done to me. It has robbed me of everything this year and what hurts more are those who fail to understand how bloody restrictive it is.
My life is ruled by my head pain, yes on a good day if I am lucky I can have a few hours sat up. So when friends come over I deliberately lie down for hours before they arrive so that I can be sat up for their visits. However even those have become few and far between. I know that people have their own lives to lead and I don’t begrudge them of that, it’s just this year has become particularly isolating. I have to thank Imogen and Sharon for always being there for me. Imogen for coming every two weeks to see me and looking after our mutts on a moment’s notice and Sharon for accompanying me on my frequent trips to hospital. Without you both I really would have been lost this year. If anything this year has taught me a lot about friendship. There have been others too who have kept in regular contact via text and for that I am grateful.
This birthday is the 9th birthday I have faced being chronically sick. In a normal world I would have gone out for dinner and had a few drinks with my closest friends. Yet again the day will probably be spent lying on the sofa / bed wishing I was anywhere but here. Birthdays were always so exciting when growing up, now they mark another year of failing. Failing to celebrate like the rest of the human race and doing it the chronic illness way. Grabbing what pleasure you can while you can. In an ideal world I would love to go pony trekking for the day or go on a day trip or see a film or play. Those days are long gone and a birthday is now a bitter reminder of stuff I can no longer do.
I should be grateful many people aren’t lucky enough to see their 43rd birthday and I am grateful for the things I have. I just wish that it would be vastly different.
Too much of this year has been spent lying in a darkened room due to head pain, which in turn has left me with far much time to think. I am even anxious about Christmas and whether I will be well enough to supervise the cooking of our Christmas dinner. I have never worried like I am worrying at the moment as I have no control over when a bad day will happen and there are no takeaways open on Christmas day should I find myself incapacitated.
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