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.

Extra Demands

I released this week, that we live a very fine balance in life. We each know how much we can do, and how much the other can do, and we pick up the pieces in quite a smooth way as we go along. Neither of us likes pushing the other too far, but I think we learn to accept that sometimes we're just not capable of something.

Mr had to go to the drs on Monday morning. He needs more Ritalin to help his ADD, and we're trying to get a home physio. Neither are yet realised, but we have to keep fighting. I was supposed to go in case his brain fog kicked in, but with my increased pain levels and anxiety around drs he let me stay home.

I first knew he was home when I got a phone call from him - he sounded very rough and was sat, or should I say, stuck, in our car. He'd just been sat there on his phone, and he felt a stab in his back, and now he couldn't move.

We managed to get him into the house and up to bed - he couldn't even straighten his legs. My mind went a bit overactive, but at the same time I pulled on God's strength. We phoned his Mum, querying whether I should drive him to A&E or not. It was decided we contact the very dr he'd just left, and wait for a chiro appointment. When the dr eventually called back, she told him to double his already strong painkillers. He was able to straighten his legs by bedtime.

I felt very lonely with him stuck in bed. Everything was left to me, which is where the realisation of how balanced our relationship is hit me. We'd previously decided to do our own dinners that night, and there I was cooking separately for both of us!!

Tuesday he made it downstairs, and he even helped cooked dinner - a blessing since I was too exhausted. His Mum provided it for us though - another blessing!

Today… He managed to drive to the chip shop - neither of us were well enough to cook. He really can't sit up for more than a few minutes, although his back is comfier when lying.

I suppose it's just a bit lonely. And it's silly, cos he has to spend a lot of time in bed, but normally I know he can make it downstairs, he can sit and play a game, he can bend to pick up a bunny… But right now he really can't, and that's a new balance to find until he's better.


His emotional strength never waivers though.

I am supposed to be being referred to our local ME specialist, who saw Mr earlier this year. I haven't given the family histories, and our personal ME stories yet - I really must… But let's just say I've been ill for 11 years; have 2 siblings, a sister-in-law and a husband with ME - I know how it works and how to manage it. I got my diagnosis 7 years ago.

The letter that I received through the post today kindly confirmed that diagnosis (big surprise), although called if "Chronic Fatigue Syndrome". That doesn't make me feel at all positive towards them, but it's not the worst bit.

It went on to say that because of this I have been, and I quote, "fast-tracked" to "group therapy".

Now, I know I have anxiety issues. And I'm on treatment for depression. And I can become very stressed. But seriously?! I have been living with this illness 24/7 for 11 years of my life. I know how to manage it. I might not have made miraculous improvements, but I have had a very enjoyable life (I'll have to post my pacing v. enjoyment discussion at some point too…!)

And you know what? Instead of going along to a meeting which would 1) make me very angry, 2) be utterly pointless and 3) make both me and my husband very ill; I am going to "manage my ME", and not put me and my husband through sitting up for TWO WHOLE HOURS before midday.

Thankfully I've pretty much gone from anger at the letter to laughing at it, but still… I was hoping for this specialist to support my benefit claims!!

P.S. I include a logo of our name at the end so you know which of us is writing. I don't know if Mr ever will, but the option is there :)