Archive for March, 2010

DLA Renewal Success

It’s brilliant wonderful news that my DLA (Disability Living Allowance) renewal has been successful!  I got the letter today and was so relieved I had a little cry.

I still can’t quite believe it.  I applied 4 months ago and it’s taken longer than last time for them to reach a decision.  And my last award ran out in October so it’s been difficult (and stressful) managing these last few months.

Great news is they have increased my mobility award, my care component is middle rate like last time.  Also fantastic is my award is for 5 years (it was 2 years last time).  That takes a bit of pressure of too.  Like my dad said, hopefully I won’t need to apply again – hopefully I’ll be better.  That would be great.  Much better than qualifying for assistance would be not needing it!

I found the applying and the waiting so stressful.  Now the decision is here and I’ve got an award I instantly feel like a fraud which is so silly.  Because everything I said in my application is true and they made my award based on my application and my doctors report.

I am so so so grateful to have the GP I do.  Without her support I am pretty sure the outcome would be different.  They wouldn’t award on my application alone, they wanted a doctors report.  Once they got it it went through quickly.  Hurrah!

This time I am going to ask for a copy of the doctors report.  I am curious but also concious that they can review my DLA at any time and if I move out of area or my doctor stops practicing it would good to have her report to refer to.

So yes a massive relief and loads of pressure off. 

I can now afford my D-Ribose, my yearly pre-payment prescription certificate (which I’ve just had to renew), my vitamins, my private prescriptions for LDN, my tummy soothing meds (not on prescription), my special dietary food & treats for my IBS  and I can pay someone (hopefully my brother’s fiance) to do some cleaning for me and maybe a bit of gardening too. 

I could even afford to get my wheelchair serviced perhaps.  One of my brakes is a bit wonky after my dad was a bit too keen to push off before I’d released the brakes.  I’m not sure it’s really worth the effort yet.  But it’s one of those things that’s an extra expense that I could afford to get done.

My enthusiasm has been a little dampened a little by a visit from our landlord this evening.  But that’s another blog post.  This one is a truimphant, if softly spoken – yeah!  I got my DLA and life just got a little bit easier.

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LDN From 2ml to 1.5ml

The first week at 2ml of LDN I discovered I could eat a lot more things than I had previously been able to.  My IBS seemed to be settling. I felt relatively good.

The second week I had some tummy discomfort but then bloating and IBS is worse around the time when I get my period.  The third week at 2ml my stomach was fairly settled and I ate quite a few meals that I haven’t been able to for a long time.  There was a little discomfort at the time but generally it was ok and I was balancing it out with safe foods.

Then the next week (week 4 at 2ml) I started getting nausea, bloating, gas and cramps after eating. I couldn’t eat hardly anything without feeling really ill. I also felt a bit fluey and headachey a lot.

Even eating “safe” meals was making me feel sick and crampy.  Last week, week 5 at 2ml, was much the same.  By midweek I was eating ultra ultra safe and managing not to feel sick or gassy or bloated or pain *most* of the time.  But I couldn’t even manage safe food like tofu – so my food intake was severely restricted – mainly rice, baked potato, well cooked carrot, mushrooms, a little soy milk with rice cereal and that was about it!  I’m not happy about not getting a good balance especially when I already feel run down.

Now I’m thinking … maybe that weekend at the end of week 3, when I was in Cumbria and felt pretty good but was pushing and has a few normal things like lasagne (yum!) actually triggered a massive IBS flare.  Or maybe I picked up a virus then that is lingering.  But I do know I’ve felt ever so horrible even when I eat safe foods.

SO! I made the decision to lower my LDN dose to 1.5ml in case it’s a side effect of LDN. Now that I’ve been taking it 5 weeks and it’s had time to settle in this could be my body’s settled reaction to the dose.

If it’s not LDN and I continue to struggle with eating then I can go back to 2ml knowing the tummy stuff is just One Of Those Things.  If it *is* the dose then I’ll should get some relief.

This is the theory anyway.

I’m also awarethe eating/tummy stuff could also be LDN working – in that it rebalances my immune system and my body is suddenly fighting things that it hasn’t been able to get a hold of before. That hypothesis is a little more tricky to handle but I’ll go through this lowering of dose to see what that indicates and worry about this theory later.

When I was on 3ml and had a lot of side effects like pain so I dropped to 2ml and over the first 4 days I could feel those side effects lessening until they were gone.

This is day 3 (or is it 4?) at 1.5ml and I have to report that the tummy isn’t much different.  So that suggests either it’s not LDN that’s causing it, or I can’t stomach LDN even at a very low dose.  However, I have had a headache come creeping back in that just won’t shift along with that pain I used to get in my neck and shoulders.  Tummy much the same – headache and pain increasing.  Energy possibly slightly increased.  So confusing!

Going to give it a week and review, then decide if I need another week to be sure … or, or, or … something!  Ugh.

What I really want is to feel like I did that first week to ten days at 2ml when I felt pretty good. Fingers crossed all this tummy stuff is it’s own thing and not LDN related at all.  At least that would mean if I can get past the tummy flare and have gone back to 2ml then I might be back to that feeling pretty good again at some point.

I’ve started to keep a weekly LDN diary for myself to better keep track of side effects and feeling good/bad/worse/better.  I can’t rate symptoms or do day by day comparisons but I can just about cope with recording notable things from the week to reflect on as part of a bigger picture.  Rating symptoms on scales totally stumps me – I think it’s an ME/CFS brain thing that does it.

If I find any conclusions – or indeed more questions – I’ll be blogging about it.


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