Thought Stream

Hey it seems like AGES since I wrote anything, it's not been through choice, but life has been keeping me busy, with not much cognitive 'oomph' to spare! I work just two days a week at the moment, and have been trying to keep up with family life and demands over the school holidays.

There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)

My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.

Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!

But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!

When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!

There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!

Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.

My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!

I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!

Dissolving Concrete!

There's been a change in the weather here, from incredibly hot and humid, to plain old chilly with water falling out of the sky! Its been so long since that happened I've forgotten what it's called! Something to do with cats and dogs maybe?

It's a great thing though, it seems to have rained through my head, and taken some of the concrete with it, who'd have thought it, dissolving concrete! My head is clearer, calmer and I can think! Well, I know I'm maybe 'bigging up' my cognitive abilities, but it's all relative!

The world should get ready today as there are some knotty issues out there which I have been a bit remiss in sorting out. It's hard to have legality/policy based conversations with people when you are having trouble remembering what you were saying halfway through saying it!

There is a little teensy weensy bit of a downside though, cos we have ME/CFS and it's effects are always there - even when the concrete has trickled through the cracks in my brain. My head is clearer and feels great and I'm loving it, but my body is putting up a mega protest of it's own since the weather change.

I woke in head-to-toe pain yesterday, not something I usually suffer from. I generally manage to stay asleep if pain comes on overnight, it just hits me in the morning as I struggle with the usual joys of waking up. But this time I woke and was unable to move, call out, or poke my hubby to wake him! I just had to lay there for what seemed like an age, sweating and breathing my way through it till my arms would move and I could take the tablets which are kept in the bedside cabinet. When the pain had gone a little I was able to get up and go lie somewhere else, so hubby could sleep on.

I worked yesterday, even though I was a little drugged up on painkillers etc, but I made it through. I'm gonna have another go today as there are a couple of meetings I should be at, and I have tomorrow off anyhow.

It's a hard thing to do, to try to explain to healthy friends/family why I'd try to get to work through something that they would definitely stay in bed for. I think it has a lot to do with the constant sickness that this disease brings. We have to get used to a certain level of 'feeling ill' as being a good day, and if we stayed at home for every ache and pain we would, most likely, never be out at all.

I'm happy to put up with this level of pain (drugs accepted of course!!) if it means I get my head back and can carry on conversations and READ!

I hope that wherever you are the weather is being kind to you,

Whatever next?

I blogged some time ago about my hubby's plans for keeping a couple of pigs in our orchard, but you never heard anything more.

Well, here we go again, he takes delivery of two gilts (sow piglets) next week! OMG, take a long look at my orchard as it is cos I think it may be a little less picturesque after they move in!

I don't really think he's fully aware of how much of his time they may take, and there's not a chance I will be mucking out or filling feed troughs! I don't think pig keeping figures highly on the recommended coping strategies for ME/CFS!

It's a fair way from the house to the orchard, (past the yurt!) so I'll only be visiting on those good days anyway!

Yesterday he and his father made a gate, and put in the fence posts around the pigpen. Today they plan to put the wire on the fence, and plumb in the water trough. Where do they find their energy from...? My hubby's father is only 76!!!

I went down, held a few bits of wood in the right place for measuring etc, then retreated to the house for a rest! Ahh, (sighs wistfully) I used to be the one working from dawn till dusk on a project like this, enjoying the whole process.

I really miss the sense of achievement I used to get from a busy day gardening or something like that. Now, thinking about it, I feel rather removed from my garden, and the whole excitement surrounding the piggy-arrivals.

I tend to just experience things in terms of seats and hammocks, as opposed to the spades and lawnmowers of the past. Mmm, feeling a little wistful now.......

I would have enjoyed the pig aspect much more too, pre-M.E. But, as it is I tend to look upon everything with cautious eyes, hoping that the elephants wont strike!

(Hey, sorry but it must have been a couple of posts since the last 'Elephant' reference, so live with it!)

Body and brain tired, thinking through sludge again, eyes preferring not to focus properly, muscle spasms, sensitive hearing etc etc, but this crazy life goes on...!

Pet pigs, whatever next?!?!???

Concrete in the mist!

23- This is how many times I've started this post this morning....! Oh the things my head is and isn't doing today. It's a painful mess of whizzing/flickering thoughts, images and snippets of remembered sounds.

On days like these I can best describe my head as 'concrete' in the mist.....! The mist swirls with these unwanted and incredibly random thoughts and 'stuff'. If I try to navigate through this mist, to think properly, I eventually get to the concrete.....this is what has happened to the rest of my brain!

(It's now much later, it's exhausting this blogging, especially when someone has concreted the inside of my head!)

It feels physically heavy and 'set'. Not in a nice 'set yogurt' or 'jelly (jello)' kind of way, but definitely concrete.

Thinking and trying to be creative (blogging etc) through this is incredible, and I think i'm going on about it too much, but today I'm really struggling and have to admit to that! I can't remember a time it was ever this bad!

It's not going to be a post with a point, I'm just resigned to that after hours of trying to write and failing,......!

This is probably my most debilitating symptom, and certainly hard to describe to others, especially our nearest, dearest and interested others. Hubby has retreated, as he can see how tough i'm finding it today.

I hope you all have a concrete-free day!

NHS Niceness!

I went to see a Neurologist this week, not an experience I had any great feelings about, other than the usual "Here we go again" type of sinking feeling. Having to explain yourself (all over again!) and your association with a disease that seems to invite derision and criticism from that particular branch of the medical profession (but not JUST that branch!), is at best annoying, but at worst it can be belittling and upsetting.

I was referred there this time because of a tremor which has begun over the last few months. Only happens visibly when I'm particularly tired, and towards the end of the day, or sometimes in stressful situations too. I feel the muscle spasms involved a lot more than others can see though, and it has become one of the signs which tell me I've done enough!

I have had tests recently, and the neurology appointment was to discuss the results. We discussed M.E. and my history with it. I spoke about my neuro-symptoms- the sensitivities, the strange skin sensations, my balance and coordination problems etc. He listened intently, and when he replied he was understanding and empathetic............OMG!

He agreed that the spasms/tremor was most likely due to the M.E., but could not rule out another option and so would follow me up in a few months. I left feeling understood and respected. Something of a rarity in the M.E./CFS world I'm sure you'll agree.

What a situation, to be sick, often very sick, but to be disbelieved and criticised so much that just one polite and understanding Doc brings about a whole blog-post! It would be bad enough if it were just one person's experience, but sadly we all know that's not the case.

But, for this tired blogger, it was a boost to her self esteem to be valued and listened to. Thankyou Dr. D!

42 !

Mmmm, I have a knotty problem that I'm wrestling with just now, it's hijacking my thoughts even though I'm trying to keep it out. It's nothing to do with ponies, drays, Sylvia, rag-rugs or any of the other 'stars' of my recent blogs. (In fact after how BADLY Merlin behaved yesterday, I'm more than happy not to talk about him!!!) No, this is about a very real issue for me, and one I've been trying to ignore for far too long.

My 'normal' existence is usually work Monday and Tuesday, Wednesday is largely spent in bed, sofa, hammock, feeling pretty sick and trying to rest up for Thursday and Friday at work again. The weekends are busy, things to be done, errands to do, we visit and work with the pony only at the weekends too. I manage a morning out of bed, or the afternoon, but not both. All this activity and still expecting to be rested for the next week's onslaught, and to do it all over again! ALL VERY EXHAUSTING!

Why am I trying to keep up this level of activity, of normality? I'm not sure. Is it because I'm not ready to admit that I'm not well enough to manage daily life like I used to, or maybe I'm scared that if I give something up I am giving in to this disease? I think it's maybe a complicated and scary mix of the two, plus many other little niggles mixed in for good measure.

What I have come to realise is that after just 7 consecutive days at home, not doing much more than eating, resting, an occasional spot of seed planting or garden watering, I feel rejuvenated! I have enough oomph to get me through the day without feeling like I'm about to fall over with exhaustion. I have even had the spare oomph to socialise a little too!

I can think much better, my neurological symptoms, mainly my horrific sound and light sensitivities have receded to a level that doesn't involve earplugs or leaving the room when the TV is on. Hey, this means I now have to put up with the awful TV that my son watches, I haven't an excuse-"Bring on the Wall"! (Sorry, it's the most apalling British program-'The Wall', google it... it's terrible!)

How to change things though? Now that's a question I've been working on for many a year! It's like 'DEEP THOUGHT'- the computer in Hitchiker's Guide to the Galaxy - all that time to ponder the ultimate question, the answer to life, the universe and everything turned out to be 42! A confusing solution that made no sense, and threw up countless other questions -hey! Sounds familiar!

I think what I'm saying is, I know working puts me on self-destruct mode health-wise, but can't really see what else I can usefully do! Just wish we had a bit more cash about the place, but I don't suppose I'm alone in that wish hey?!?!?

Elephants really are the worst of animals! Not those lovely lumbering grey monsters that move majestically over the plains of Africa. No, I'm talking about the sneaky, scary, debilitating ones who plague the lives of many sick people by, well, sitting on them!!!

More Precious Moments.....!

Well, I've promised an update to my last post all week. It's taken this long to sort my head and it's antics out - I'm having a few more neurological symptoms than I'm used to. Lots of fun with hearing issues, shock-like reactions to touch and especially unexpected sounds etc etc...you know the drill. Enough of that, it's just not too exciting to write about, I need to work out what's going on before I can share much.

Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.

Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.

I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!

I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!

The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.

I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).

I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.

This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)