Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Confused

I am so confused. So, my duty today, is to share that confusion with you.

I'm just so sick and tired of being constantly ill. If it isn't one thing, it's another, and for the most part I can't even figure out which thing it is causing the symptoms, and therefore what to do about that which is going on with my body. 

What am I talking about? Well, this may not actually make sense, until you've read all of it ... possibly twice.

I have M.E., as we already know. I may have PMDD. I also may be gluten intolerance. (There are other things, but these are the ones confusing me presently).

If you're familiar with my blog, then you're already familiar with some of the ins and outs of M.E.. But what is PMDD? Pre-menstrual Dysphoric Disorder.

"The symptoms of PMDD are similar to those of PMS. However, they are generally more severe and debilitating and include at least one mood-related symptom"

This was first suggested to me as a problem early last year, by my counselor. I had come off anti depressants just before Christmas 2009. In the January I had what I can only refer to as a funny turn. It's very hard to describe, but I became extremely irrational, I lashed out at friends, and people I interacted with on a daily basis (ironically, not Ian). I thought I was losing the plot, but it went away after a few days. Then it happened a few weeks later. It was my counselor whom identified that it was happening prior to menstruation. It was extremely scary. I talked to one of the doctors at my surgery about it. The notion was dismissed. I had one more episode, and then it stopped happening. I haven't thought anything of it until the last few weeks.

A few months ago, during the extreme stress of the Atos medical assessment procedure, I completely lost awareness for about twenty minutes; when I regained awareness I found I'd been self harming, and apparently harming the carpet also. A few weeks ago I had another 'episode', and again, last week I turned on my friends. It's horrible. You don't know you're doing it; the feelings of irrationality and paranoia creep in so gradually, that it feels rational, it feels like what you're thinking is right. And then it suddenly stops, and your mind feels like it has been released from a clamp, and you feel so stupid, guilty, and sheepish.

For me, the day that those feelings stop, they are replaced by a rush of OCD. I need to clean, tidy, obsess over something. So of course, I completely exhaust myself, and crash. Then I have period pain to deal with. I'm at the introductory period pain at the moment, which I've now had for three days. I'm expecting the extreme agony to kick in some time today or tomorrow. I have my kick-ass anti-inflammatories by my side awaiting their destiny as saviour of the month.

I finished the three month gluten free trial ten days ago. I gradually started introducing gluten to my diet again. The idea was to see whether I noticed any difference to my health with no gluten in my diet. I had failed the blood test for Coeliac Disease. I had thought that there was no difference to my health. I have now changed my mind.

I gradually introduced gluten back into my diet. I had Chinese pancakes the first day. A slice of bread the next day. Nothing much seemed to happen. I don't remember what I ate on the third day, but I spent most of the day flaked out exhausted and asleep; I thought this was simply an M.E. reaction to some of the activity from the previous day. I kept falling asleep wherever I sat or lay down.

So, I've eaten gluten fairly normally for about a week now. I didn't really think much was happening. I've been exhausted all week, but I put it down to an M.E. crash and stress. It was only yesterday when G came over and watched me fade extremely fast after I ate stuffing with my lunch, that I realised that I am reacting to gluten.

I had decided to not go over to his place for the weekend. I was feeling grumpy and exhausted when I made this decision. So here's my confusion...

Why was I grumpy? Was it because I am pre-menstrual? Was it because I am reacting to gluten? (One of the symptoms of gluten intolerance is lowered mood following gluten consumption). Was it because I am exhausted by M.E.?

Why am I so exhausted? Is it because I've been pushing myself too hard with M.E.? Have I been pushing myself too hard? Is it because of the stress of everything going on around me? Is there so much going on anyway, or is that just PMDD making it feel that way? Am I exhausted because of hormones preparing my body for menstruation? Or is it because I am reacting badly to eating gluten again?

How is my doctor ever supposed to work out what is going on with me, if I can't figure anything out to give him a lead to start with? This is just ridiculous. I am struggling so hard to cope at the moment.

Contrast! ... Tuesday 2nd August 2011

Yesterday was just basically a really really bad day. It started off ok. I rested for the morning, reading a little and dozing a little, until I got up to go to see my counsellor for an appointment at 2pm. My appointment with him went pretty well .. it's what happened right afterwards that was problematic .. in fact, I wish he'd been there!

When I got back from G's at the weekend there was a card on my doormat from the postman stating that I had a parcel at the depot to collect. So, I decided to park in one of the roads near the post office and go get it. Except, when I parked, I hit the kerb, and my tyre went straight down. I think it burst actually. I stood by the kerb and stared at it for a few moments, then figured that it wasn't exactly going to go anywhere, so I decided to go and have my prescription filled and pick up the parcel before I did anything. I texted G, Ian and Brian asking what I should do.

For some reason Ian's odd answer was that I should buy a cheaper car. This I didn't understand. Brian was otherwise engaged with various daughters, but he at least managed to commandeer the Tesco delivery man and rescue my shopping for me. And G, whilst at work, said he'd come and help me, but because he is so far away I told him not to. I don't want him to have to make up several hours at work later in the week after all.

I do have AA membership, but I was told that they won't come out just to help you with a puncture. Plus it would presumably take them a while to get to me; I was expecting the Tesco delivery and worried about getting home in time for it. Plus I was just around the corner from ATS, where I knew a very nice guy worked. So I decided to go to ATS and see if someone could help me change the tyre. Unfortunately the nice guy wasn't there.

I was walking with my stick. I was exhausted from having gone to the chemist and post office, and then walking through to ATS. I was shaking really badly, and knew that if I didn't eat anything I'd probably pass out or collapse or something. The guy said he'd be able to help in ten to fifteen minutes, so I forced myself to go over to Morrisons and buy a Snickers. It didn't help much.

One of the mechanics went to my car with me. He fiddled around for a bit and then said that he couldn't get the spare tyre out. So I drove my car, on the burst tyre, back round to ATS. He still couldn't get the tyre out. He said that the bolt holding it in had seized up or something like that. He said that my only option therefore was to purchase a new tyre. I looked at him and said 'do I have any choice?'. I was told not. So I told him he'd better take the payment before fitting it, since I really wasn't sure I had enough money in my account. He took the payment, fitted the tyre, and sent me on my way. I actually felt so giddy and sick after this that I should probably not have driven home. I drove carefully.

When I spoke to G he was disgusted at the price I'd paid for a tyre. £108. You see, I do not know anything about cars. The workers at ATS knew this full well, since the very first thing I had said to them was 'I've got a puncture and don't have a clue how to change it!'. So, I had no idea whether £108 was an average price for a tyre or not. All I knew was that they had told me I had no choice.

So, G phoned ATS a little later, asking them for a quote on a tyre of the same kind that I had had, and was not surprised when he was told that he could have one for £60. He then asked them why they had sold his girlfriend a tyre for £108, and told them he was going to complain to head office. I've written a letter to go alongside his.

I'm not quite sure how he feels about it, but I feel embarrassed. I feel really really stupid. I feel stupid for getting a puncture in the first place. I wish I could park properly. I also feel stupid for having been conned. And I feel disappointed that someone I asked for help took advantage when they could see how ill I felt, and I had specifically told them how bad it would leave me financially.

I was very teary eyed last night. Exhausted, but in such a way that I couldn't actually rest. So I settled down to working on my family tree a bit. And surprisingly woke up this morning feeling quite positive, having shaken yesterday completely off during the night.

The sun was shining. I don't know why, I just seem to always feel better when the sun shines. So I decided to have a bath. And while the bath ran I tidied up my eyebrows and bleached my moustache. I can't afford to have Marie sort them out for me now, so figured I should do it myself. I don't look too bad.

Having completed my bathing process I took a phone call from our estate agent. He was asking me whether we would consider £92,000 on the house. The answer was that I knew Ian would not consider it, but he could speak to him if he wished. It seems that the man who came to view the house last week, telling me that he was looking at it for his father, was actually a builder looking at it on behalf of the previous viewers we'd had. I am quite offended at the clandestine approach. But to cut a long story short, we got the offer for £95,000 from them eventually, so have accepted. 

Soooo, now it gets real. It should take about eight weeks for the sale to be finalised. That's eight weeks to pack my house, and work out what we're going to do with everything in it. I think I'm going to G's, but I'm still not entirely clear on it. I'm still in shock a bit. Not really taking it in. The enormity of everything is overwhelming me. It's the end of one life, and the start of another one. I am scared of both.

But hey .. the sun is shining, and the house has sold!