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

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

just a bit of blather

I haven't written anything the last couple of days - I've been dull and uninspiring! At least I would be if I wrote anything, I'm sure! Nevertheless, I need to update my ratings (sighs, rolls eyes) otherwise I will forget, if I haven't already...

Friday: 5/10, medium
Saturday: 5/10, medium low
Sunday: 5-6/10, medium
so far today: 5/10, medium.

Nothing much interesting there! When it comes to the energy levels this is actually what I'm supposed to be aiming for - that is, consistency rather than highs and lows. So although there is no fantastic improvement, it is a good thing at the moment when it stays the same. Then it can gradually increase - I hope! Headache wise it is very hard to say. I need to go back to the doctor soon to get more pills (sighs again, more eye rolling), and I can't see any significant improvement, but there you are. I hate to and fro-ing from the doctor.

I need to sort out a vet's appointment as Charlie is due for his booster (more sighing, profuse eye rolling) but I am thinking of changing vets to one slightly closer, and perhaps more sympathetic to my situation? But of course sorting out somewhere new is a bit of a chore-bore (bore-chore?) too. Hang on....

...looks in yellow pages...

Hmmm they do have open surgery hours at this practise which may well be easier for us - the other vet is appointment only so there's a lot of checking with diaries etc. Goody! I hate the hassle of making appointments (have I said this before by any chance?!!) So we could just take him in one late afternoon/evening and get him sorted, whenever's best for us. Ahh....that's good.

Blogging does make me do things! More specifically, it helps me remember. One of the most irritating symptoms (of which there are many!) of CFS, I find, is the memory problem. My short term memory can go completely at anytime. All those things people say are a 'sign of getting old' I've been doing since I was 14! I can walk upstairs and forget why I'm there, go back down, remember, go back up, do something else, go back down, then finally succeed to remember all the way up the stairs what I was supposed to do the first time. That is, if I remember at all. Many's the time I'm hit with sudden panic over what I've forgotten. I make a joke of it, but I hate it. I write things down, but there are things you think of on the spot and go to do - I forget on my way there. Sad, isn't it? I was, in a way, relieved to find this was a common symptom - that it wasn't just me. But it does mean I struggle with it frequently. However I am grateful that there isn't a more serious reason. It does make me more understanding, however, of those who do have more serious reasons.

Went for a nice little walk with Judy this morn. My stamina isn't great though. It takes very little to exhaust me. I know it sounds like I'm moaning; I'm not really. It's just what I'm having to deal with at the moment. I'm feeling reasonably content in myself, am enjoying friends' company when I can manage it, and there's a new theory that Vitamin D can help CFS symptoms. The sun can't be a bad thing, then! Though I did put some sun cream on this morning. These days the seasons shift so quickly. Theoretically it's still spring - but stepping outside is like stepping into summer.

the days

There have been moments this past week when I've felt like I had something to write here, but for various reasons, never did. Me being me, I have now forgotten most of those things. The upshot of this is that I can kid myself that they were highly significant, inspiring thoughts, and no one can ever prove otherwise!

Life feels too full of appointments at the moment. First I went to the opticians on Friday, and was informed there was no change in my prescription. Possibly the need for a stronger prism in my glasses may cause headaches, but he didn't think that was the case and did not want to do that unless it was the last resort.

Then I went back to the doctor about my headache on Monday, to find the doctor I previously saw has now left the practice. So I saw the main partner of the practise. I have to say although in some ways his manner is quite didactic, he really does know what he is talking about. There is something reasurring about being told what something is and what to do about it with absolute certainty. Having had unhelpful responses before, I did not mention my neck tension, but he made me stand up and did various things with my neck, turning it to various angles. At one point it made an almighty crunch and I gave an involuntary yelp of pain. He then diagnosed it as a muscular headache, which is what I suspected all along, and gave me some pills to relax my muscles. I'm not keen on taking pills for everything but I shall see how it goes. I have to be on them at least 3 to 6 months to know if they work.

That afternoon I rang up a physiotherapist and ended up with an appointment the next day, so I now have exercises to do 6 times a day and am seeing her again next Tuesday. Actually because my OT programme has 4 rest stops per day, I simply do my exercises before or after each of those, and when I wake up and go to bed. It helps to have the structure in place to remind me! Then I have a hair appointment on Thursday to trim my heavy locks. I have such thick hair that even that can give me headaches if it gets too long. It sounds ridiculous, but there you go.

It's all a bit of a bore. In my free time I feel quite tired and dull, and unable to write or create or anything of the things left me now that I am not working outside of the home.

The truth is, sometimes I feel life slipping through my fingers even as I am living it. Defining moments seem absent, and I do my daily battle with fatigue. Is this what I am?

I was thinking yesterday that when we are young we assume the future will take care of itself, to some extent. I will go from A to B like so. I will do this, then this will happen. We expect to have accomplished certain things by a certain age. But the great deception of 'what will be, will be' causes many a disappointment. We make our future. The future is neither our enemy or our friend. Neither does circumstance define who we are, but how we respond to circumstance. It is not what we've got, but what we do with what we have. Sometimes I feel so dull and inspired all I can think of is what I'm not doing.

It's occured to me that to some extent I must focus on getting well, in every aspect, before trying to achieve everything I want to do. I don't find it easy though, sensing the difference between my life and that of others. Having a creative personality both helps and hinders me. It can increase the frustration I feel both at my health and at my own self for my undisciplined imagination, for my dull wittedness, for my fatigue and for the heaviness that can all too easily replace hope.

making appointments

Well, I've always been quite pleased with the fact that the doctor's surgery we go to is one of those who will make an appointment for whenever you want it. This morning, however, I ring up and no, I can't make one for late tomorrow morning. I have to ring up tomorrow morning in order to make an appointment for tomorrow morning. I'm the sort of person who likes to get things sorted in advance, especially with appointments. It makes me positively grumpy, I tell you. No, thank you, I don't want one today, I want one tomorrow...