keeping on going....

I keep forgetting I've changed my password. It gets me every time.

Worked on my assignment this afternoon. It's an article about being married to church ministry and it is definitely beginning to take shape. Plus I've already done some of the following assignment so that one should follow quite swiftly. Really enjoying this. Feel very buoyant most of the time at the moment, even when tired. Even when too tired to do anything, I turn things over in my mind and formulate new ideas.

I am shattered this evening however. The medication for my head also makes me feel bright but this can be a problem as I end up overdoing things energy wise. I must be careful. The doctor is weaning me off these and increasing the dose of another...if that has no effect I have to go to see the neurologist, what fun.

Plus I've got my eye appointment in November where they will try and identify what prism strength I'll require, as I think I've already mentioned. They put stickers on my glasses which, my optometrist tells me, 'look a bit odd'. Hah, I will walk around looking like some strange alien creature.... It's all good material, I suppose! I have to go on a train journey at the end of November and have to change trains a couple of times - if I'm wearing these sticky things there'll be a whole host of people giving me a curious, sidelong glance....

Even if it's annoying at the time, I tell myself, there'll be lots of anecdotes later. That's what I tell myself....

mildly elated

I had a trip to the doctor's this afternoon, another appointment to monitor my headache. Was a little frustrated I had to go this afternoon, since I had our review group session at the CFS/M.E service this morning (nice to see everyone again; the official sessions are over now, but we still plan to meet up). For me that makes a very tiring day.

However, I came out of the doctor's surgery feeling somewhat elated; after feeling my neck and asking me questions, she is referring me for physiotherapy. The previous physio I had, I had arranged myself, and had failed to get a referral from the previous doctor's practice - one doctor there said it 'wasn't bad enough' for physio, which frustrated me - what happened to prevention is better than cure? That was when I was merely struggling with my neck and shoulders - now of course it is causing me headaches and has done so for over a year. Another doctor told me I was too young to have physiotherapy, and perhaps I should wait until I was older - which seems to me to be utterly obscure - does anyone agree?!

Anyway, I hadn't even mentioned it at the new practice (frankly, I'd given up trying) - but she decided it completely of her own volition. I was assailed with relief as I walked home and actually became rather choked up. It's not something I've verbalised, even to myself, but the fact is I am in constant pain and nobody seemed to be taking it seriously. I felt like it had finally been recognised, and confess the feeling of that brought a lump to my throat. Now I can have physiotherapy at one of the local hospitals and not have to worry or feel guilty about spending money.

What a relief.

Today:4/10, medium

counting down

Phew. Have not been writing much, due to simple exhaustion I think! Sunday was a very busy day, we had the nativity in the morning service, then we were out for lunch (v nice) and then we had the carols by candlelight service in the evening.

The nativity went very well, with a couple of minor comedy moments (but no one got stepped on, thank goodness). In the last song the shepherds were meant to clap and dance around, but only one actually did so. He did it with gusto, bless him, and it was wonderful to watch. Then at the final chord, one of the others spontaneously threw his soft toy sheep into the air, which caused a great deal of mirth, not least from his mother, who was sitting next to me. (Thank goodness they didn't throw baby Jesus.) Herod, by the way, did not look even slightly like Dracula - so that I'd completely forgotten it had even been mentioned!! He did sport a rather fetching black wool beard.

I read a poem at the Carols by Candlelight service, at the beginning - I could relax and enjoy the rest of the service. I was utterly drained by the end however, and was simply unable to go round chatting to visitors, which made me feel a little dejected, but still it was a long day for me - considering what I am used to. Had to try and reign in any frustration and sadness, knowing that the overwhelming tiredness itself would not help any rationalising that was needed.

Have just come back from having a blood test - what fun. Had to go to doctor's last week in my usual 'have you still got the headache?' - 'Yes' scenario. Mentioned my rapid heart rate and she wants to check my thyroid although of course this has been checked before (is there anything they haven't tested me for?!). I've actually twice been sent for an ECG but because of the procedure they don't think a fast rate is notable - most people are nervous / embarrassed anyway. So all that has established is that I don't have an irregular heartbeat. But still it thunders on. I've been pondering if it has anything to do with the levels of adrenalin and the body's stress response, which I've been learning about as part of the programme (see here).

Meanwhile, Christmas is on the doorstep. If I don't write anymore for a while, I'll take the opportunity to wish you a very happy, blessed Christmas and a wonderful new year. May we all have the moments we need in order to truly appreciate the season...

Today, and most days: 3-4/10, medium -high

yet another doctor's appointment

Am trying to get on with various bits that need doing today, while privately stressing about the doctor's appointment I've made for this afternoon. My headache medication will run out this week, so I have to have an appointment, but the doctor I saw last time isn't there this week so have had to make an appointment with another, unknown-to-me, doctor. I do not relish having to go over this for what must be the fourth time. I'm tired and I have a headache, therefore I'm really not feeling up to it. Alas that is precisely why I have to go. Bleah. I'm hoping I can just be prescribed enough for whatever period he sees fit, and then I can go back to the other doctor to re-group and if necessary change tack on how to treat it. Oh, why won't it just go away?

just a brief note...

...Wednesday's appointment went very well. After perpetual hissing beforehand about not wanting to go or knowing what to say, it was a real relief. The GP with specialist interest who works with the service is kind, cheerful, and very practical - and very easy to talk to. What they have proposed is that I go into the programme of group sessions - what I should have had last year, but because I was away for the first one I did two individual intensive sessions instead. They feel I need more support from others on the same programme, and that I would particularly gain from the later sessions - on steps to recovery and setting goals, so I don't feel trapped or isolated in doing this any more.

I'd talk more, but rest stop 1 approaches, and tonight I am having a few friends round, not too many, for a mellow evening as a kind of birthday thing. Today is not my birthday, but I wanted to combine it with Rachel's visit. Sarah should be coming but texted to warn me that she woke up feeling awful this morning, so she will let me know later. So I'm gently preparing for this evening - wanting to make things cosy looking and nice, since the weather is awful - rainy and dreary.

Wednesday: 4-5/10, medium high
Thursday: 4/10, medium
Today so far: 5/10, medium

think on this...

This is the simple card I made for the current Salt Challenge. The gems I used for the flower centres are larger than I wanted them - but I've run out of the smaller ones.


How hard it is to direct our thoughts! There are those who are, by temperament, much more disciplined in their thinking than others - and there are those who can, amazingly, completely empty their minds. But I am so easily distracted! My mind burbles and bustles, tumbles and trundles, whirls and wiggles until I just want to say shut up. Directing my thoughts, and meditating, is a discipline I have been trying to learn, especially with the scheduled rests that are part of the lifestyle manage programme for my CFS/ME. At the moment I am finding it tremendously difficult...but I am digressing (something my mind is very, very good at).

How easy it is to have our minds dwell on unhelpful things. These can be dark, evil things, but they can also be more subtle. How easily we can become frantic or anxious. How easily we can forget to look towards the light. This is a challenge for me because I have such a chaotic mind. It goes off track very easily. Thus I find it hard to have long, established quiet times with God like some people do. I want to. I want to think about things of God instead of things of me, of my worries, of negative thoughts about life and health, about future and circumstance. I want to direct my thoughts towards things such as those in this verse, and sometimes I succeed. And sometimes I don't. I can only be honest with God, and pray that he helps me.

Today I had a doctor's appointment, with my new doctor. She seems nice - my records haven't caught up with me yet so I had to give a brief resume - not the easiest thing and I gabbled on rather fast as I didn't want to take up too much of her time! Still, she was helpful, and I think I will be able to talk to her in future, which was the whole point of changing. She upped my dosage of the tablets I am on for my head, as I am on a very tiny dose, to see if that helps. Even the new dosage is classified as small, so I am happy with that.

I have an appointment at the clinic of the CFS/ME service tomorrow. I think they are worried that I am getting depressed and not managing very well. As I said to my doctor, I would describe my feelings as emotionally weary. Because I am so wretchedly tired, and this frustrating headache / neck ache in addition to it, I feel ill equipped to deal with events - whether they be physically or mentally demanding. I feel very easily swamped, and drawn to anxiety. But it is not constant - it is only on the days I am particularly tired, or when circumstances have piled up unhelpfully. I pray that the discussion will be constructive and I can go away feeling comfortable with the outcome.

Do you ever wish you had an 'off' switch? Or at least a 'standby' mode where you weren't thinking anything, just recharging? I do.

Today: 4/10, high

doctor, doctor

Felt really, really dreadful today. Had physio in the morning, which was okay, and then my OT called in the afternoon. She instantly detected the extreme tiredness in my voice and started to probe. Admitted that I was struggling with frustration over being so reliant on others, and unable to contribute. She asked if this was making me feel tearful. Squeaked (tearfully) "yes". She wants me to talk to my GP, which led us onto the trouble I've had at my current practice, with my original doctor leaving, then the next one leaving after that. The one I'm with at the moment knows his stuff, but I haven't really broached the topic of my fatigue with him, and not sure I could talk easily. Am considering changing to another practice where I can start afresh, though this is daunting. My OT wants me to make some enquiries, and she will talk to the GP linked to the clinic for advice. So I am trying to do that and hoping it is the right thing. I don't know anymore.

Today: 3-4/10, medium high

feeling welcome

Well, I finally made it to the doctor's this morning...I tried to make an appointment last week but the doctor in question was away, and I was fed up of going from doctor to doctor (the two I saw previously have now left the practise). Then I walked to the chemist to get my prescription for some more of these headache tablets. The doctor reiterated that it may take up to a year. Ho hum. Alas the appointment clashed with my first rest stop, but the day after a Bank Holiday Monday is not going to be an easy one to get the appointment time you want...

Yesterday we stayed in for the Bank Holiday since the rain was ridiculous, certainly during the first part of the day. Charlie's hutch was standing in a pool of water. I brought him inside for my sake as much as his. The legs on his hutch are plastic so it's not too much of a problem, but I needed to put my wellies on just to reach him. The weather forecast was rain until Friday, but I've yet to see any today. Charlie doesn't mind; he likes being at the hub of things. He spends most of his time staring plaintively at me.

So, we watched a film yesterday - we got 'Enchanted' out from the video shop. Whether I was just in the right frame of mind I don't know, but I loved it. I thought the bit where she summons the pigeons, rats and insects of New York to do the housework with her (to a happy song) was hilarious. Andy and I decided that there is a good possibility I am a Disney character. I have that dopey streak, and would adore having animals and birds come at my tuneful call.

We went to a different church on Sunday evening as we're not having evening services at the moment due to the building project. I enjoyed the speaker, but couldn't help noticing that absolutely no one came to speak to us. Granted there were a mix of churches there and they may expect a few more strangers than usual, but we could have been anyone. We were much earlier than most and were sitting there by ourselves for ages before many people turned up, and started nattering to one another. I couldn't help a wry smile as I've been reading Simon Jones' book 'Why bother with church?' and in it he uses the anecdote of a woman visiting a church for the first time. The description he used of what going into the service was like was eerily similar - small clusters of people talking to each other, musicians up front, the occasional polite smile. One of our church's great gifts is it's welcome. I'm used to almost being bowled over with people's delight at seeing me. I suppose I couldn't help notice the contrast!

There's a balance between overpowering and completely ignoring someone. Often we don't go up and talk to someone because we feel maybe they want their own space. (I felt a bit of that on Sunday evening - people wondered who we were, but didn't actually approach us.) But that's something we can be sensitive too when we do talk to them - say a warm hello, perhaps ask where they're from, and be discerning as to whether they are pleased to be talked to or would rather have some space. Often people still appreciate a genuine hello and gesture of welcome even if they don't feel like a long conversation. Staring awkwardly at them from afar is certainly not going to help! And simply assuming someone else will talk to them is equally unhelpful - other people may be busy or talking to someone else.

Hmm, have I bored you stiff with my waffle yet?

Energy levels: 4-5/10
Headache: medium

Yesterday: 5/10, medium low
Sunday: 4-5/10, medium - high