It’s been an absolutely crazy couple of weeks over here.
I saw my GP yesterday and she was nice. It’s amazing what some correspondence from super high up professors will do for a girl with a poorly understood illness… The biggest difference I’m noticing so far is regarding my allergy situation. I was seen at immunology and they did a load of prick testing down my arm. It turns out I am allergic to the entire freakin’ world which is super fun. As a result, I’ve gone from one 180mg Fexofenadine tablet a day to two or three when needed. I also have Cimetidine 400mg to take twice a day because it works on a different histamine receptor and could also help my reflux – or something like that?! The five days running up to my appointment were utter hell. No antihistamines left me drowning in a pool of snot and feeling like I wanted to scratch all of my skin off. Guess what? I’m NOT allergic to rabbits – Nigel can stay!! They did start telling me that because of my allergy to house dust, my home needs to be immaculate. I need to do this and that and… Wait a minute. I’d earlier in the week seen my physiotherapist who had given me get another lecture on pacing. Do the NHS prescribe cleaners? Because if I’m going to damp dust on a daily basis, I’m going to need a freakin’ miracle over here.
The pain clinic gave me Tapentadol to try. My GP had never heard of it, nor had I. And because it’s so uncommon, the pharmacy didn’t have it either and had to order it in. It’s an opioid pain killer and seems to be considered as a potentially less life-wrecking option to Oxycodone – YAY! I’ve only taken the first one today, so we’ll see how that goes. A lady in my EDS support group shared with me that sustained release medications seem to make her less ill, so I asked for that option. No spews yet, not even close.
I’m still on the Paracetamol at least twice a day, Vitamin D and Esomeprazole daily. It’ll come as no surprise that I invested in a pill box. I’m never quite sure if I took my tablets or if I just thought about taking them. Now I’ll know!
When I was in seeing my GP yesterday, I told her that I really want to get back to work. Her face looked as if I’d just taken a shit in her cereal. At least this confirms that she had be pegged as a lost cause! You can only imagine my amusement when I went on to tell her that I’d crowd funded £1500 for a wheelchair in two nights. Stick that in your pipe! I’ll write another blog on this next time because it’s bloody marvellous, but I’m DELIGHTED with myself and feeling really positive at clawing back some sort of meaningful life…
I need to go and get ready for my amazing friend, Geo, to come round and cut my hair. Anything past my shoulders is not easy for me to deal with so a whole lot of hair is coming off. Womp womp.
Ren x
broken down body 
Allergic to the world, but not to Nigel, hooray! I do believe the NHS does home health visits, but outside of that, you could at least try to contact someone about getting compensation for cleaning services since it’s necessary to your health. Or bat your eyelashes at your boy-toy to see if you can get him to become a fastidious housecleaning manbeast. If he’s anything like my dude, I’m sure you’re laughing at the suggestion. 😉
My dust and pollen allergies are pretty bad, so we have filters in all of our furnace vents. Whatever makes it through the main house filter hopefully gets trapped by those. It’s still dusty in here, but not nearly as bad as it was. Hepa filters are good at reducing allergens in a small room. Unfortunately, I haven’t found a way to get rid of all dust….because we all contribute to it with our human dirt (ewwwww!). And of course asshole guests opening all of the windows when it’s code orange air quality. Grrrr.
I’ve heard of Tapentadol. You’ll have to let me know how it goes for you. If you can tolerate it (and I really really hope you can!), I think you’ll notice a difference in your energy levels and mood. Being in extreme pain 24/7 is exhausting and demoralizing. Fingers crossed! ❤
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Man thing is lovely and does his “doodies” (duties) when required but he really does make a meal out of doing things. It takes me 15 minutes to clean out the rabbit, but I asked him to do it today and it took over an hour and resulted in me getting hurt because there was junk all over the floor… He just doesn’t see dust, I don’t think? As for the bathroom, two hours later it was like a swimming pool, stank of bleach and still looked dirty?! Our house really isn’t dusty anyway. I think they are just used to having to drill into people the importance of cleaning for allergies – not having taken into consideration that what they were suggesting would absolutely ruin me. *slow clap*
I’m really hoping these drugs make a difference. It’d be such a relief just to have a little bit of relief.
R x
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The dreaded prick test is no fun but it can definitely be life changing knowing what life adjustments and medication tweaks have to be made after finding the results. Though for those of us allergic to pretty much everything….it can mean quite a few large adjustments. At least it seems your team is really trying to figure stuff out and help you make the most out of your circumstances. You definitely must let us know how that new medication works. Fingers crossed for you my dear that it doesn’t cause any troubles. Good luck with the new do and give Nigel a pat for moi!
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To be honest, it didn’t throw up any new food allergies – I’m glad of that. And my drug issues aren’t true allergies as such, but intolerances. The immunologist said this didn’t surprise him as my body seems to throw a hissy fit generally when exposed to ANYTHING. I’m wondering if being on more antihistamines will mean my body is less affronted by new pain meds? Here’s hoping.
It’s been four hours and I’m not curled up in the foetal position – so that’s positive. Bah ha ha. Thanks for always being so lovely x
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This all reads a positive to me – congratulations on the crowd-funding. I don’t know what, if any, benefits you are on, but if you have PIP, you may be able to argue you need more to get a cleaner. Or look into local disability charities that might be able to help you source a cheapish cleaner. Because my house is in a mixed state of building work and people physically unable to clean (me, and Gouty Dad), we actually are in too bad a state to get a cleaner: they’d have about 10″ to ‘clean’ and 2 floors to climb over to get to that 10″. Again, congratulations. x
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