I'm a bad blogger! I've been meaning to write my latest blog post for a few days now, to keep you all updated mainly. I was also very tempted to post my thoughts about the infamous Benefits Street, but I'd probably just be re-iterating what I've said in social media posts anyway. I found it all very triggering. It set off the anxiety and depression BIG TIME. I'm not sure many people even realised this.
I guess that's invisible illness for you. Your mind and body could be SCREAMING at you. You feel sure you must at least look...panicked....? But no one notices. Not in person anyway. I know the odd person who knows me extremely well and can tell when something's up. I wouldn't want anyone fussing over me in person anyway. I never know how to respond to that apart from being annoyed and feeling patronised. To have someone notice and just ask what's up would be ok though.
Here are the updates from Christmas onwards:
I finally completed my bladder diary! And yes, to put it oh so eloquently, I piss like a racehorse ;) I can literally do it on command! I kept forgetting to fill in the diary, so in the end I decided to just keep a notepad and pen in the toilet. I gave the GP examples from days when I had more caffeine, no caffeine, more water, when I was just in the house and when I was out for a while. So she had a good variety to go on, to see if there was anything I was doing that may actually be affecting my bladder.
Next topic to discuss, pain. I've been through all the pills recommended (in the UK) for Fibromyalgia. The Amitriptyline did nothing but make me foggy and slightly help with sleep. I had a very very slight improvement with the Lyrica but this quickly wore off. The Gabapentin turned my brain to mush, made me put on weight and did nothing for the pain. She told me that she would refer me to the pain clinic and in the meantime to wean off the Gabapentin (yay!!!) and she has prescribed codeine and ibuprofen. I'm yet to try the ibuprofen but the codeine doesn't seem to be doing a lot at the moment. I'm going to need an extra bedside table for all these damn pills!
Onto the next thing, sleep. I have barely been sleeping recently! Have tried distracting myself with things like repetitive games, reading, calm music, baths in the evening, milky drinks, thinking about my day even (that used to work) but it did nothing. I recently tried herbal sleeping tablets too but they gave me nausea so definitely didn't help! I explained this to the GP and she has prescribed me a short course of sleeping tablets. I was at the point where I just literally needed something to knock me out. I was surprised it was so easy to get the prescription though. From what I'd heard, this is the last resort and doctors are generally reluctant to give these pills out because of potential addiction. I wouldn't want to be relying on these in the long term but hopefully this short course will get me back into a healthier routine :)
Last thing, mental health team. I explained my worries about being referred back last time, and asked the GP if she knew what was happening with my referral. She told me I needn't worry, as the RAS team tends to pass people from department to department but I will be seen eventually. In the meantime, there's places like Mind and of course I have emergency numbers to ring if I don't feel safe (something I nearly had to do thanks to Benefits Street setting me off. Think before you judge!!!)
I had my hospital appointment, with the Bladder Specialist in the Physio dept, the day after my GP appointment. I had no idea what to expect and I was honestly imagining some sort of group session with everyone doing pelvic floor exercises! Luckily it wasn't that. I saw a (very perky!) woman who asked me lots of questions about my bladder and bowel, was very nice and understanding when I had to nip to the loo halfway through my appt, and gave me some good advice. She doesn't think I have any bladder weakness (although I potentially could damage my bladder if this isn't sorted soon) but it is definitely a physical problem as well as a psychological one. I gave her my bladder diary and she reckons I am sensitive to caffeine. I also have fizzy drinks with citrus flavours in, as well as orange juice and grapefruit juice. I thought these were healthy, which they technically are, but these are also bladder irritants. So I need to cut down and eventually give up the caffeine (*cries!*), do the same for the citrus drinks and have decaff things, cranberry juice, water and milky drinks instead. That's not too hard to adjust to, but giving up caffeine will be tough. I didn't even mention energy drinks!
I also get some bladder retention (where you don't fully empty it when you go to the loo). This contributes to me feeling bloody terrified before a long journey, and is why I spend so long in the loo beforehand. The specialist gave me some exercises to do to help with this. It's basically a case of rocking back and forth and sort of wiggling. It looks pretty ridiculous, but if it helps, it's worth it! No one's going to see me, I bloody hope not anyway!! Ok, so I'll be seeing her next month to see how I've been getting on. Tablets for Overactive Bladder will be pretty much last resort.
Last time I was due to have a WRAG appointment, I had barely had a wink of sleep and felt extremely ill, so had to get my mum to call and say I wouldn't be able to make it in. I was honestly quite worried I'd be sanctioned but the woman was actually very nice. One thing that surprised me was that she said I should be in the Support Group. I think she's now beginning to realise just how much my conditions affect me (both physically and mentally). It's just a shame she's not the decision maker! Anyway, she said she would contact me with a new appointment, but I haven't heard anything yet.
Not ESA related, but still benefit related, I'm going to finally apply for PIP (the benefit which is now replacing DLA). This is something I should've applied for a long time ago, but up until recently I wasn't sure if I was considered disabled enough to apply for it. I'm of course coming to accept that this isn't all going to just go away anytime soon. I'm hoping my condition improves enough for work eventually but I do need help with the extra costs that come with disability, so maybe I am eligible? I can only apply and see anyway.
I'm sure I was going to write more, but it's gone out of my head now! If I think of anything else, then I will write it in a new post.