Phonecalls.

We weren't well enough to do any more DLA prep today. Mr did several phonecalls on my behalf though - the joy of being unable to use a phone!

He spoke to the tribunals court and they're giving us advance payment to have taxis, which is wonderful. (Altho' scary, as taxis freak me out. At least Mr will be with me!)

He spoke to DLA because we noticed some of the pages of my original form are missing in the photocopy they spent me, and we're concerned they're missing in the tribunal's copy too. They said it could take 3-4 weeks to sort, so we're just going to have to take a complete copy with us!

He also spoke to DLA to check we'd got the correct appeal papers. I'm not convinced they understood, but it appears we do.

He then had to phone ESA because they had the wrong phone number for me... Now they're going to call back at some point to give the spiel about the changeover, which is scary. Mr mentioned to the person he spoke to something about how ill the process was already making me and how much worse it would get, and it sounded like the person took personal offence, but hey.

I'm not coping too well. Severe headpain, hate this ME and need to get out of this horrific benefits system. I can't cope.

DLA prep I

About to do more DLA tribunal prep. So anxious, heart is pounding and want to cry. If this is the state I'm in when in bed with my husband just doing prep for the tribunal, what state am I going to be in on the day? This is a terrible ordeal.

Trying to blank out ESA for now. Trying to believe it will all be ok.
                                                         

Finished prep for the day. Had major brainfog initially but dihydrocodeine helped with that and we got a bit done. Noticed they'd lost some pages in copying my form though so going to have to mention that when Mr phones on Monday too!

Yesterday.

We managed to start prep for the DLA tribunal yesterday. Just a few bullet points for now so we know our main arguments. We're using the Benefits and Work guides. I'm a bit concerned though, as they are talking about this huge booklet of appeal papers, and we don't have anything like that... Are we missing something? Mr is going to have to phone up on Monday and find out, if we're able to wake up early enough.

He also needs to phone the ESA people, as the number they have for me is my parent's house. The thought of him doing them is stressing me out :(

Not coping as well today. I suppose this silly part of me always hoped that we'd be healthy before I was transferred to ESA. And some people dare say it's "just a form".

If I didn't have Mr and God I don't think I'd want to even try and stay alive to make it through all this. They're my strength and they fight for me.

New Battle.

With just under a fortnight until my DLA tribunal, today we start the prep for it. There is no funding available to help us, so we have to work it out ourselves.

Today I also received a brown envelope. This one informing me I'm being moved from IB/IS to ESA. It is terrifying. They intend to phone me in the next couple of weeks - I cannot use phones due to anxiety so here's hoping they will be content speaking to my husband. Then I believe I receive the forms, have very little time to fill them in, and will be faced with a medical and no doubt a tribunal. And then the 6 monthly renewals. It is terrifying. Trying to keep hold of my anxiety. Hoping this doesn't make us relapse. Praying that this isn't as hard as I think it will be.

Entries may be short, limited health, but I will try to follow the process here.

I read a lot of blogs.

That might even be an understatement... And within those many, many blogs, are a good amount of Christian relationship blogs. Man, that sounds tedious. But I've got into them because of the people writing them, and the honesty with which they write.

Lots of these blogs hit notes with me, whether it's the balance of housework within a marriage, or being stuck in an "inbetween" (inbetween studying and working, renting and buying, being a couple and being parents etc). I so often go to start writing a comment, but in the midst of the comment I end up saying, "it's different for us though, we've both got chronic illnesses, so we have to work it this way, and it's like this because of it...", and so on and so forth... And then I hold down Cmd+A, and press delete. Because noone who reads that will understand. And I don't have the energy to explain.

You might be stuck in an inbetween, but at least you can actively do stuff! We're stuck in an inbetween where just making a meal is enough to confine us to bed spasming in pain. You might argue over who has to do the housework, we have to call our parents (who are pensioners!) in to do the most basic of chores because we just can't. We have to rescue the other person as their legs give way, literally pick them up off the floor and laugh through it all because it's the 5th time it's happened since we woke up a few hours ago.

Our life is unimaginable to you. But don't block it out of your head, because ME can strike anyone at anytime.



Just over 2 weeks to my DLA tribunal. Applied for taxi fares, here's hoping they'll pay...

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.