My day began at 7am, which is a lie-in for me as I’m usually awake at 6am. I slept in because I’d tossed and turned all night, which I usually do if faced with something to do the following day.
I had breakfast, then started printing off information for my Anaesthetic/pre-op assessment appointment this afternoon. I should probably have done it over the weekend, but to be honest I needed some time off from thinking about my health. Or doing paperwork. In fact, from doing much of anything because after the events of last week I’m exhausted.
It took an hour to sort through all my notes, medical and drug history, get it in order and print it all off. As I was reading it I thought “you’re mental if you think they’re going to operate on you. Every single drug you’ve tried in the last 15 years you’ve had anaphylaxis to, so the chance of a massive operation going well is a billion:1. You must be crazy to even be contemplating it – you do know the risk is that you end up bedridden again for the next 10 years because of how it will affect your (very stable) M.E. don’t you?” I felt weepy before the day had really begun.
At 9am while the dog walker was out with Bertie I got my food together. I’d decided to eat dinner at lunchtime (at my Parents when I dropped Bert off) and take lunch with me to eat in the car this evening. I’d cooked the day before, so my dinner was just to reheat at Mums. I packed a sandwich, cold drink (it was 22C when I set off and the air con still isn’t fixed), flask of tea (it was going to be 12C and raining in Newcastle!) and some sweets for energy.
I got my food, Bertie’s food, paperwork, a pillow, my TENS machine, my iPod and my handbag ready in the hall to pack into the car. I then put a load of washing in the washing machine and emptied my airing cupboard as I’m having the gas boiler serviced at the crack of dawn tomorrow.
I then rang the Garage as my car was booked in tomorrow afternoon to have the new compressor fitted but I’m having to take Bertie for his MRI scan instead so I needed to reschedule (which I could tell pissed the secretary off no end), then rang the groomer and booked Bert in for a clip this Thursday.
I then got myself dressed, braced and put my TENS pads on and at 10.30am bundled all my gear and the dog into the car. I then realized someone had parked in my private driveway for the hundreth time to visit the Upholstery business nearby and was blocking me in, despite a 2ft NO PARKING sign. I stuck my head round the door of the workshop and said “I need my car out please” to be met by a member who staff who literally barked at me “can’t you bloody wait a few minutes?!”. At which case I barked back “I’m going to the hospital, so no I can’t. Move the car!”. I wanted to burst into tears then and there.
I drove the 7 miles to town, filled up with fuel and went to the Deli to collect my yeast free bread order. I then went to Mums to drop off Bertie and found her upset as my Uncle had been taken into hospital last night with suspected Septicemia (she’s still grieving over suddenly and unexpectedly losing my other Uncle only 2 weeks ago). I tried to eat something but it was hard getting food past the knot in my stomach.
I set off from Mums at 12.30pm, even though my appointment wasn’t til 3pm. Afternoons are visiting time at hospitals and the car parks are always full to overflowing so I needed plenty of time to find a space.
I nearly had an accident 10 minutes into my journey, when I was in the middle lane of the motorway overtaking a man in a vintage car, who then simply tried to pull over into my lane with no warning. I couldn’t go anywhere as there was a BMW zooming up in the 3rd lane doing about 90mph. So I blared on my horn and the vintage car man swerved back into his own lane. It didn’t do much for my already frazzled nerves and I wanted to cry even more.
The A69 between Carlisle and Newcastle is 50 miles of mostly single lane road, notorious for accidents as it’s the main link between the north West and the north East of England and always heaving with slow moving lorries who struggle to climb the mountain range. However, today seemed more congested than usual and we crawled along at between 25 and 30mph, on a road which I usually cruise at 50-60mph, with me getting more and more frustrated and worried that I wouldn’t reach my long awaited appointment on time. Turned out a man towing a caravan was tootling along at 25mph causing a 10 mile tailback of irate drivers. We all wanted to fucking strangle him.
As expected, when I finally reached the Hospital the multi-story car park was full. I’d never used the main car park which is further up the busy main road and had no clue where I was going. I did get there, only to find it too was full. And my appt time was getting closer and closer. Eventually I saw a man jangling his keys and chatting on his mobile phone, so I wound down the window and said “excuse me, are you leaving?” His reply: “I’m on the goddamn phone you rude bitch!” and he turned his back on me. “Sorry” I shouted, “it’s just that I’m getting desperate”. I was that tiny bit nearer to bursting into tears.
I continued to stalk cellphone man and after some faffing he left the car park and I nabbed his space. After a pit stop at the loo I made it to the rabbit warren that is Main Outpatients on time, then sat for nearly 30 minutes twiddling my thumbs. I was then sent for an ECG, had my bloods done, my BP taken and my weight recorded. I then had to go through a very in depth questionnaire with the nurse who looked shell-shocked at all my medical conditions and the 2 page drug reaction sheet I gave her.
I was then sent back to Outpatients where I waited for another 30 minutes to see the Anaesthetist, who was lovely and greeted me with “this will be the shortest consultation in medical history because I’ve just spoken to the Gynaecologist who says you’re having the Mirena Coil and don’t need surgery”. Am I? News to me. I didn’t even see the Gynaecologist when I was there last week. I saw a bloody trainee who proceeded to tell me that if I could hold out the Menopause would cure my endo and adeno, and failing that a hysterectomy definitely would cure me. Both of which is complete bollocks. He needs to go and read the message boards because there are many, many women out there who’ve had total hysterectomies and gone through the menopause and who still have endo pain as it’s oestrogen driven and we continue to produce oestrogen even with no ovaries.
Anyhow, back to today. I told the Anaesthetist that I wanted a hysterectomy because the Mirena would do nothing for my adhesions which are what feel to me like they cause the most pain, particularly on my right ovary and my bowel. So bless her she said “well try the coil for 6 months as the Gynae suggests, but in the meantime I’ll contact Dr Seneviratne at St Marys and ask him about surgical and drug options, plus I’ll contact Rheumy regarding your EDS and surgery and your Immunologist about M.E. and surgery. Oh, and I’ll hand your case over to my colleague who runs a surgical allergy Clinic and who is better equipped to be your Anaesthetist than I am.”
I left hospital at 4.50pm and hit rush hour traffic, which were I live consists of 2 tractors and a bike but is slightly more stressful in the middle of the north’s largest city. I did make it onto the A69 before the tears started and I cried most of the way home, salty snot mingling with my egg buttie which I ate with one hand while steering with the other (hurrah for automatic cars and cruise control). It’s now 7.15pm and I’ve just got home.
I’ve had enough now. Enough with the explaining my diseases. Enough with the medical appointments. Enough with the planning every day with military precision. Enough with explaining that, yes, I know the Mirena coil only emits a tiny amount of hormones but you wouldn’t say to someone with a peanut allergy “oh, it’s only a very tiny piece of peanut and shouldn’t affect you” would you? There’s a reason I’ve not taken hormones for the past 20 years, not withstanding the fact the last time I tried them I was so depressed after only 3 weeks I literally could not get out of bed.
I can’t do anything about the pain of my EDS. I can’t do anything about my faulty immune system or my faulty nervous system. But I can have a hysterectomy and do something about my godawful pelvic pain which I’ve lived with since I was 11 years old. OK, it might not cure it entirely but anything would be an improvement on living like this.
So, I now have to decide if I’m even going to try the Mirena coil and if I don’t if that will count against me. Then in 6 months I have to do the whole gynae appt thing all over again. I don’t know if I’ve got it in me. I’m too tired. And despondent. And fed up of the whole being ill thing. Some days it’s all just too much.