Monday, 28 June 2010

Teenage Manual wanted, any price considered!

Parenting with a chronic illness that keeps you out of the bustle of family life can be a challenge. How do you manage to stay 'in touch with' and 'current'? I feel that over the years things have been OK, my son's growing up has not been too much affected by my illness and the constraints of energy etc that it imposed on me. He was 6 when I became ill, and hasn't really know me any other way!

He is a resilient chap and, having had many challenges in his early life I think that Mum being tired and having yet another nap/quiet lie down just didn't figure too much. He taught me a lot about acceptance.

But Ooh the teenage years!
My son is almost 16yrs old now, and has so far been blessed with quite mild-mannered hormones. His attitude has been mostly easy going and fairly happy.
You seasoned 'Teen-handlers' may be thinking we've had it soft till now, but my son has special needs which have delayed the onset of 'teen-monster' but have brought us their own constant challenges in return!

Now I fear the tide is changing!! Issues around access to the internet, social networking sites, and YouTube have been flashpoints for a few months. There are some very scary things out there which have been accessed.

I feel like I'm letting my son down just lately, having my me-time has put extra barriers between Mum and Teen. It's hard work to balance the time/energy needed to stay a full part of the family life, and also take the time out that you need to safeguard health and energy. Working, recovery from that and everything life entails are a big enough drain, but to add the guilt of resting when you know you're needed elsewhere is a heartwrencher isn't it?

I'm sure there are better ways to deal with it all, I just haven't found it yet...but I'll keep trying!
If anyone has the manual that comes with their teenager, and doesn't need it anymore....I'll even pay postage!!!!

Friday, 25 June 2010

"Smile please!"

Oh what a laugh we had yesterday!!! There are some 'shenanigans' going on at work, something planned for a colleague's retirement so I can't say anything incriminating. But it involved many giggles yesterday afternoon.

I was photographer, (I know it sounds intriguing, I'll share when I am able to!) and took an active part in setting things up. Not hugely physically demanding but I knew, as I was laughing along, that of all involved......I'd be the one doing time later!

Sometimes it's easy to get wrapped up in a fun situation, be enjoying it, but all the time knowing how things will most likely be in a few hours, or the next day. Most of my payback usually starts just hours after something 'too exciting', but it can be anything up to 24-36 hours later, so I don't think I'm quite done yet!

Last night I began with the arms and the throat, not to mention being suddenly so heavy that horizontal was the ONLY option! My skin crawled and my brain malfunctioned!

Predictably, this morning, I am here in bed, legs refusing to play the game as yet, arms sore and shaking, eyes zooming about refusing to stay focused on one thing. I think I probably deserve the raw throat from all the laughing, but I'm not sure the rest is fair...!

There seems to be little chance of showering/dressing just yet but my body might still come back 'online' so fingers crossed!

I'm not sure when, or even IF I will make it out of here today, but what photographs I have to show you when I can.....! I am supposed to be in work today and will, as always, do my best- but if I make it, please girls.........NOT SO MUCH HILARITY!

Saturday, 19 June 2010

Brain...? What brain...?

AGH! I'm just about ready to sign up for a brain transplant! Just right now I'd cheerfully flick a switch to shut mine down completely.

For the last couple of days/nights, my brain has been in random thought and vision mode! I JUST CANNOT finish a thought, or even pursue it for more than a couple of seconds before it slips away from me. Pushed out by a randomly (or so it seems) created thought or mental picture.

Overnight I've been unable to sleep, but my head has been a constantly flickering blur of visions and thoughts that I have to admit I have no control over. (Pretty much like when Mr.H has control of the TV remote!) All efforts to concentrate on something, even a very familiar something, are as useless as a chocolate tea-pot!

I can't tell you how wearing this is, but I'm sure many of you don't need telling, and are probably nodding sagely as you read this! I'm at the stage where it hurts now-not an actual headache, but an uncomfortable 'stirred up' feeling that makes me want to retreat to a darkened room to wait it out. Life will not permit that today though!

Writing this has helped a little, calmed the maelstrom that rages inside. Another of the hidden delights of my condition I think..... "thanks!" It only happens occasionally but when it does it is devastating and sometimes lasts for more days than I'm happy to accept.

I'm afraid I have written this post, but, due to my dodgy concentration, can't manage to re-read it to see if it flows or there are any typos, so I'll trust spellchecker and you all!
Here's to calmer seas!

Thursday, 17 June 2010

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!

Sunday, 13 June 2010

Gorillas Don't Like Pasta Sauce.

A slow start today, mostly cos my body had a few issues of it's own first thing. There seemed to have been some kind of stampede whilst I slept, and everything in it had run over me, or, my arms to be exact!

My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!

I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)

After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!

Saturday, 5 June 2010

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!!!

Wednesday, 2 June 2010

Just a little step towards a dream

Another small milestone has been reached in my attempts to travel with my pony, dray, ME/CFS and my elephants. We now have Sylvia's dray and have tried Merlin in it, just to see if he fitted and would be happy to pull it.

He is used to pulling a fairly lightweight two wheeled carriage with hubby and I on it, but now we are asking for something a little more from his little spotty legs! The dray is built completely out of wood, with large heavy wheels, and huge steel springs-Merlin could quite rightly have said 'NO!', but to his credit, he was happily pulling it with three adults and an excited terrier on board, after just 5 minutes!

Anyone remember Steptoe and Son? (1960's comedy about Rag and Bone men in London) My hubby has downloaded the theme tune, and we intend to play it when we go out (When nobody is about I might add)! Maybe I'll have to invest in flat caps and knotted scarves for us both!!!

We need to sort some little bits out, then we can try longer journeys with him and the dray, just a few miles at first to build his strength, then maybe more-we'll see and take it very much step by step.

I know where we can stow the camping gear, clothes, food, water etc..... but I'm not sure how my elephant will fit in with travelling and camping by horsedrawn vehicle. It could either be ok, or disasterous and I don't think I'll know till I try. I've never been one to shy away from an experience just because I have ME/CFS though.

It's completely unknown territory for me, being sick and doing this crazy thing. I will just have to be sensible, plan for resting and recouperating, and listen when my body crys "ENOUGH!"

But one thing's for sure, I'll keep on blogging about it, if nothing else it's a great way to record things for my own treacle-slushy brain, I'd really hate to forget!!