Update: Drs Appointment

OK, so I mentioned I had a Drs appointment yesterday.

I'd actually been needing to go since November/December, but... I can't make appts because I can't use the phone, so Mr has to. Mr forgets to do things and has to be motivated constantly. Because I didn't want to go to the Drs, I haven't been reminding or motivating him. Yeh, vicious cycle. Anyway, on Thursday, when I was barely recovering from the work-focused interview, Mr informed me he was phoning the Drs on Friday. I hoped, for a future appt. He said no, for an appt on Friday. I had a wee breakdown... I agreed tho, just to get it over and done with.

It actually went well, we have a good Dr to talk with.


I've still got The Itch. Did I mention it got rediagnosed as Chronic Vulvitus? Or something like that. I was on a very potent steroid cream for 6 weeks; then a potent steroid cream for 6 weeks; and then it felt a bit better for a short while. Then I tried the hydrocortisone cream, and it made it itchier. Then I got confused. I was getting progressively more itchy, so had 2 weeks back on the potent steroid cream. My Dr has now prescribed me a moderate strength steroid cream, which I will use for 2 weeks before trying... errr... a nappy rash cream. Fun, hey?! I have shown improvements on the steroids. I mean, the very potent one made the skin very fragile and sore, on my thighs as well as my vulva. That improved on the potent one, and I've started to produce natural lubricant again. I think we're making progress, it's just working out how best to manage it now.


And... I am now on an antidepressant. Citalopram, to be precise. I've considered them for years. But I was too young, and homeopathy helped, and I simply didn't want to. I've been scared of losing my emotions, losing my libido, and a million other things. When they were given to me, I felt the weight of the stigma attached to them land on my shoulders. But I feel proud that I'm taking them. It feels like the most grown up decision I've ever made, because I'm actually trying to take control of my life. I feel positive about it.

The most difficult thing about it is that it sorta means delaying starting a family. That is really, really hard to deal with. Especially as we haven't used contraception/been careful since late 2011, and now we have to be somewhat careful again... I don't want to be on this long term, I'm hoping within a year I will be strong enough to manage without it, and then we can start TTC properly. But noone but our Dr and my homeopath knew we wanted to start a family, so noone knows how hard this is...

It's also not advised to take Ibuprofen with it, so I'm going to have to be super strict with that - I can't imagine getting through the first few hours of period pain without it, so we'll see how it goes. The Dr didn't mention my Dihydrocodeine though, so I assume that's ok!

As for the reason we've eventually taken this plunge with an antidepressant? Well... I am sick of feeling so overwhelmed, suicidal, unable to cope. Mr is struggling to deal with my hours of screaming/crying/shut down every day, and he needs something to stabilise my emotions. The reason my mental health has got so severe? ESA. Work focused interviews. Medicals. Appeals. Tribunals. Brown envelopes. Just hearing the letterbox go gives me a mini panic attack now.

I pray these tablets are worth delaying our family for. I pray they help me. I pray I can take control of myself again. And I pray that an improvement in my mental health won't mean they class me fit for work, because my physical health is still more severe when people realise.

 

12 Years.

Tomorrow, I turn 22.

The last time I was well for my Birthday, I was turning 10.

This year, on top of the ME, the back pain and the thrush, I also have a cold.


Of course it saddens me some what, but I know it will be an amazing day with my husband and family <3


In other updates... Got homeopathy again this week, to try and sort out dosage confusions. Mr has ADHD clinic too. Next week I've got dentist, then week after that my DLA tribunal. My anxiety is remaining surprisingly low. Had the drs this week, and have a potential gyne referral for the thrush, and I am now on dihydrocodeine along with Mr.

It helps with my brain fog (well, the heavy weight of fog, frustration and anger in my forehead) as well as dealing with my sensitivities and pain, so it's quite good :)

My Health.

My health isn't just a list of terms such as ME, depression, anxiety, sleep problems, back pain and thrush.

My health isn't just the information detailed within my NHS file - just a list of what the drs see - and how they choose to see it.

My health isn't the list of prescriptions I try each year.

My health isn't the smile I put on my face when I try to hide how I feel.

My health isn't the thousands of words and hours of essay writing taken to claim the most basic of sickness benefits.

My health is what I have to live with TWENTY FOUR SEVEN.

This year will mark 12 years with ME. Today marks 6 months with thrush. I wish I could have a break.

Some rambles.

Wow, I have 2 whole followers... Thanks! Sorry I haven't written in a while. It's been in my thoughts a lot, but my thoughts have been so numerous and disorganised that writing them down has felt impossible.

I did too much at the beginning of November, resulting in the last 4-6 weeks being spent resting more than normal. One of the big things to have hit us as a couple has been that I've been too ill to cook for us. Thankfully this tied in with Mr being awarded DLA, and so takeaways have been an affordable option on such days. Without that, I honestly don't know what we'd have done.

There's been a lot about ME in the media lately (from news articles about how many school children could have ME, to The Food Hospital on Channel 4 saying they're just tired people who need to eat right). To be honest, I have generally ignored it. That might sound odd, but I haven't been able to handle it emotionally lately. Just coping with keeping me and my husband going has been more than enough. From what I've heard, ME has continued to be portrayed inaccurately, and since that only fuels my anger it's best for me to keep away. On top of that, the benefits cheats being publicised so widely and the hate campaigns against disabled people have left me scared just to leave the house.

Me and Mr have been constantly told (by people like the local physio who was nice but useless, to a back masseuse who hammered me until I cried) that we should exercise. Noone who has ever experienced moderate (or worse!) ME would say that. When you have to think twice about how you are going to eat tonight, or if you can reach to have a drink, exercising is just a joke. One person even told us it wouldn't make us worse! Maybe not for a healthy person, but a body suffering from ME doesn't work like a healthy persons, and the slightest bit too much can cause huge setbacks, as shown by my recent crash.

The long term tablets Mr was put on for his ADD (methylphenidate hydrochloride) appear to generally be making his thinking clearer, and easing some of his brain fog. The short term tablets (Strattera) are knocking his ME, even on the lowest dose, so are being used with caution. His dihydrocodeine is still helping his pain, but with starting to sit up again his back pain is showing up more.

I get to see an NHS homeopath again next week, which will hopefully help me get back on track. Spent the last year fighting funding issues.

We both saw a back masseuse this week. She really helped Mr, and is gradually bringing his back to a healthier state. I struggle with the slightest touch on my back, and so the work she was doing to me has made me quite ill overall. I knew it was too much but she didn't listen to me when I asked her to stop, and I wasn't strong enough to stand up for myself. As bad as my back and neck problems are, I won't be trying that again til my ME is much better.

I've also had thrush for the last 5 and a half months. With having ME, I don't think my immune system is strong enough to fight it. Today I was informed my dr will no longer prescribe me the one cream which has been easing symptoms... But she will prescribe me tablets I can't even swallow... She is convinced they will work, even though the other 7 prescriptions I've had haven't! So we went out and bought the cream (there's a reason we have free prescriptions though!) and will have to go in and fight for it on Friday. I think Mr will be doing most of the talking like he did today. I get too angry and upset. My anxiety is rough.

Sorry if this is bitty and doesn't read well. I set up this blog to document how difficult this life is, and have since discovered that it's almost as difficult to truly write about and do justice to.