A Breath of Fresh Air

How I'm getting back out into the countryside whilst living with MS

Archive for the tag “fatigue”

Back to Basics

I’ve felt as though I’ve been indoors more than I wanted to be recently. I’ve had a dragging fatigue which hasn’t helped. However, I’d had enough and decided to take myself in hand!

spring sunshine

spring sunshine

The sun was shining; I grabbed a book, pulled on a coat and plonked myself on the front step. I remembered how easy it was to get some fresh air – and no exercise required either!

I started to think about the garden, and to consider what pottering I could do without too much exertion. So I’ve pruned my roses. I’ve swept a few leaves. And I’ve acquired a garden sheep.

garden sheep

garden sheep

I’ve also had coffee with a friend, entirely outside! It must be spring! I came home feeling very ‘outdoorsed’ – and, again, no exercise involved and a very pleasant hour spent!

The flowers are beginning to emerge now, too, which always lifts my mood, and the garden is aflutter with busy birds. I will definitely be sitting outside with a book and mug of tea whenever I get the chance!

emerging primroses

emerging primroses

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Bright Skies

What a beautiful end to November! We had experienced three solid days of fog and I was beginning to despair of ever seeing the sun again. Then Sunday dawned: the mist had lifted and the sky was clear blue. Even better, I was off to archery!

It was wonderful to be outdoors. I was even too warm in my carefully put on layers as I sat, putting my bow together, bathed in sunshine.

archery under blue November skies

archery under blue November skies

It is exactly a year since I completed the beginners course and decided to become a member of the archery club. I’m so glad I did. It’s such a friendly place and provides a wonderful setting to spend some time outside.

and surrounded by woodland

… and surrounded by woodland

It was quite odd to see the new members setting up on the field, having just completed the course themselves, and thinking that that was me a year ago. I’m not sure I’ve improved greatly in that time, but that wasn’t ever the main aim. Others certainly have improved, and I’m sure the new people will too. But I’m mainly enjoying mixing with new people, learning something new, and not dwelling on what I used to do.

my archery chair

my archery chair

I’m very pleased to say that I’ve been able to go to archery for three weeks on the trot – I think it’s January since I last managed that! That is definitely the up-side to having had a quieter life recently.

However, I’ve been quite disappointed with my form week on week – instead of improving, I’ve got steadily worse! Experienced members have been really supportive, though. I think it’s a known ‘thing’ that people put pressure on themselves and so get worse (apparently!). They also reassure me that the important thing is to enjoy coming. That it so true … though I’m going to try a heavier bow next time just to see if that helps!

a perfect sunset to end the day

a perfect sunset to end the day

I have started to notice that I’m less wowed by the feeling of happy fresh air tiredness that I get from archery or tandeming or gardening. Don’t get me wrong, I really, really appreciate it, but it doesn’t take me by surprise as much as it did initially, when it stirred a memory from some time before. Now, it is something that I experience relatively frequently and it feels more of a continuation of the outdoor part of my life, which had had a blip in it for a while.

Swings and Roundabouts

I’ve been swimming again, and it was so lovely. I find it very relaxing to gently make my way up the pool, rest, then gently make my way back down again.

I found myself trying to work out how long it was since I’d last been swimming … how long since I last felt that I had the spare energy to go swimming. It was definitely before my last fatigue-filled relapse in February, and could well have been some time before that as I’d not been on great form for a while.

Anyway, it made me feel doubly pleased to be in the water again as it meant that I was still on an upward direction from that time, I was still improving, and hopefully this energy level was going to remain for a while.

I felt on a high all day and couldn’t wait to go again, though I was waiting for the inevitable collapse the next day … which didn’t really happen! Granted, my legs were reluctant to do much for the rest of the day I did go swimming but I didn’t expect them to and I was just buzzing inside anyway so it didn’t matter!

I think that my body is having a bit of a chance to get its act together because it’s had more time to concentrate on doing that recently instead of holding me together through various significant events that I’ve had this year.

It really has been quite a year – full of fab things! It was such a pain that the severe fatigue relapse kicked in just before it all began.IMG_9323

First, there was my parents’ Golden Wedding celebration in March, which was a wonderful opportunity to chat to people I’d not seen in ages, and to enjoy seeing my parents having the chance to share their day with so many people they’d known for so long.

My sister came over from New Zealand to be part of the celebration, and she stayed with me for a few days too. It was great to catch up. I think that we also both appreciated being around someone else who was in a similar position to the other; we didn’t need to explain, our MS is reasonably similar for each of us. I could take her around my town at my pace which was perfect for both of us. (It actually took us three days to do justice to the shops and, in particular, the cafes!)OLYMPUS DIGITAL CAMERA

A couple of months later, our eldest turned 18. Another lovely occasion, as well as a bit scary!

Then in the autumn it was our turn, with our Silver Wedding and a trip to Scotland in early September and a party at home at the end of the month.

In between, I took part in a tour of Anglesey on our tandem, when I was still feeling somewhat below par, and enjoyed a trip to Scarborough, again using the tandem.

So, it’s no wonder my body hasn’t had the strength to take me swimming as well! It’s taken a quieter few weeks, with no big events to plan on the horizon, to give my body the time to rest.

Even though on the outside it doesn’t look like I’ve had to plan much – just turn up in a suitable dress with my family, consider presents appropriate to mark these significant events, invite friends to our party to celebrate with us  – behind the scenes, I’ve had to do some serious micro planning, especially to manage my energy levels.

Arisaig, Sotland

Arisaig, Sotland

The fact that I’ve had to think so much about these events in advance, and the difference that I’m now beginning to experience now they are over, just goes to show how much nervous energy was taken up with planning anything vaguely significant.

As I say, it’s been a fab year, and I seem to have got safely the other side of the extreme fatigue relapse. It feels like an exchange I can live with to have had all these great events which I was able to fully enjoy, but to have had less energy for swimming, archery, canoing or as much tandem riding as I would have liked. At least, it does now that, as life has quietened down, it looks like I’ll have more energy for some of these activities again – remembering as ever the MS mantra of pacing, pacing, pacing!

my anniversary roses

my anniversary roses

Step by Step

garden steps

garden steps

Our garden is completely wrong for someone with MS – it is full of steps. Some days I look at those steps and know that they are a climb too far.

The situation hasn’t been helped by the garden growing increasingly wild over the last two years as neither Pete nor I have been able to manage it. Then it started to feel like a really big task, so it became even more unattractive. However, this summer we’ve been at home more than usual and the weather’s been pretty kind, so we’ve been tempted to tackle the undergrowth.

I found myself tending the steps. It was partly a necessity: unless I could clear them I couldn’t climb them. They are made from railway sleepers with grass between them, and there’s a hedge to the side of the main flight. The sleepers were covered in moss, the grass was overgrown and you had to fight the hedge to walk past it.

my first success

my first success

I sat down on the sleepers and began to attack the growth. It was very soothing. As I worked, I could hear birds singing in the hedge, and could smell the earth as I pulled up the weeds. Though I’d brought gardening gloves, I discarded them in order to enjoy the feel of the dirt between my fingers.

Once one step was cleared I could climb to the next and repeat the process. Sometimes I was watched by our curious rabbit, not sure about someone encroaching on her territory.

Time passed without me noticing. That first day, I found that I’d been outside all afternoon and it felt wonderful! I’d had oodles of fresh air and had been doing something useful and satisfying. When I looked up at the steps I was amazed at the difference – the steps were actually visible once more, and it was lovely to see the railway sleepers, fixed with much effort by Pete, back in all their glory.

I was now hooked. I headed up the steps when time and energy permitted, cutting and scraping away at the layers of growth, getting gradually higher. Around me, Pete fought back pernicious brambles, so that shrubs that I’d planted several years ago, reappeared suddenly as mature plants that looked like they belonged there.

being watched

being watched

Being fully involved in the uncovering of our garden has given me extra energy. I’ve not thought about not being able to climb the steps. I’ve just done it because the desire to be in the garden has been strong enough to get me up there.

I struggle severely getting down the steps again – I have to take care not to fall. Clearly I am exerting myself, despite thinking that I’m just pottering with my hands. I do squat on my haunches and tug at stubborn clumps of grass, and I can feel my stomach muscles working as I use the secateurs. It must all add up. That my legs are complaining and I collapse exhausted on to the settee show that I’m doing some exercise.

a step too far ... for next year

a step too far … for next year

I’ve also noticed something else – when I have a break from yoga over the summer or at Christmas my body usually stiffens and aches so that I’m forced to do some exercises at home. However, this summer that didn’t happen. Maybe steps aren’t so bad for someone with MS!

A Skye Adventure

I have been walking amongst the Black Cuillins of the Isle of Skye! I never expected to be doing something so adventurous amidst those awesome mountains again.

Black Cuillins from Sligachan, Skye

Black Cuillins from Sligachan, Skye

Pete and I haven’t been on Skye for way too long but, fortunately, our Silver Wedding anniversary gave us the necessary nudge to get us back, retracing part of our honeymoon. We made numerous visits pre-children when we climbed several Red Cuillins, as well as one mean Black one (after a previous aborted attempt due to Scottish weather on our honeymoon).

We have also explored the island by car, heading down most of its roads in our quest to see as much as possible. However, on this visit we discovered that there was a particular road, with a very tempting boat trip at its end, that we hadn’t previously been down.

Cuillins from Elgol

Cuillins from Elgol

This was the road to Elgol, and the boat was the Bella Jane. The road took you round the south west part of the island to give a view of the Cuillins that was hidden from the main route up the island. Even better, the Bella Jane took you close to the hidden Loch Coruisk, only accessible through the mountains by foot or by boat.

We drove for three quarters of an hour along a single track road, past hamlets and single houses dotted amongst the long rough grass, and on round the wide empty shore of Loch Slapin, with a glimpse of the small isles beyond. Finally, a severe drop down to the sea brought us to the hamlet of Elgol, with its handful of houses, three huts for boat trips, and, most amazingly, a village school! Right on the water’s edge – it must be the best placed school in the country!

darkening atmosphere

darkening atmosphere

The tiny harbour faced the Cuillins across Loch Scavaig. Although they were still a little distant, they managed to look rather less than welcoming. You knew that to climb them would be a challenge, only to be undertaken by an experienced walker (indeed, an experienced climber for several).

Our boat brought us ever closer to the rocks that formed the lower slopes of the mountains. As we drew nearer, the rocks loomed larger, darker and more forbidding. It felt colder, more serious.

basking grey seals

basking grey seals

The mood was lightened by the sight of seals basking on several little rocky islands. Then we turned into a beautiful dark green lagoon, with Cuillin rocks rising out of it. The boat moored below a flat rock and we climbed a steep metal ladder (with a handle at only one side – I clung on with both hands!).

Now my adventure really began! The walk from the mooring to Loch Coruisk usually took about 10 minutes. It took me about three times as long, with several stops.

steps up from the lagoon

steps up from the lagoon

The effort was completely worth it. I was walking amongst the Black Cuillins! The path was muddy, grassy and stony. It was uneven and there were puddles. I was properly on the lower Cuillin slopes! Some of the route was even over the distinctive, grippy gabbro rock that made up those mountains.

views whilst walking

views whilst walking

 

the footpath

the footpath

It was an exhilarating walk and at journey’s end I was able to sit above Loch Coruisk, enjoying the brooding, empty beauty of the scenery. Others may climb the jagged peaks; I have conquered the walk to the hidden loch.

wilderness of Loch Coruisk

wilderness of Loch Coruisk

I have to confess that the midges did find us but even they didn’t manage to spoil the moment!

Red Cuillin on road to Sligachan

Red Cuillin on road to Sligachan

It was a memorable trip, and one of the highlights of our long overdue return to the west coast of Scotland. Oh, those magnificent mountains! They nearly had me weeping!

 

The Tandem Goes to the Seaside

 

Now that the tandem is part of the family, we decided to take it with us on holiday to Scarborough. It was too heavy to manoeuvre it on to a roof rack but could be fitted on to a rack on the back of the car once the wheels had been removed. It was still a bit of a challenge but one that Pete was up for!

the tandem at South Bay, Scarborough

the tandem at South Bay, Scarborough

The bike was able to take us on trips from one end of the bay to the other; too far to have wanted to travel using the wheelchair and, of course, much more fun!  On a couple of days when we’d persuaded the teenagers to do their own thing (I’m not sure how much persuading was actually needed!) we headed to the spa at the bottom end of South Bay and found a quiet, sunny spot to enjoy the views before sauntering along to the restored Victorian cafe (or brasserie) with its spacious proportions – all high ceilings and relaxing atmosphere.

We then cycled the entire length of the bay, past the South Bay beach, with its colour and bustle, along Marine Drive (very bumpy over the cobbles!), past North Bay and its surfers, and as far as Scalby Mills. There, the heat of the sun forced me to hide inside a pub for a refreshing drink!

at Scalby Mills

at Scalby Mills

We took the high road back, stopping at Blenheim Terrace, off Castle Road, to survey the fine views. We were able to look down on the route we’d just taken and across at the splendid castle, standing firm on its ancient rock. There were plenty of helpfully placed benches to use and we sat happily on one for some time, enjoying the beautiful blue sky and glistening sea.

The journey was about four miles in all but exceedingly good value for the distance! We had hoped to do some more adventurous rides: along the old railway line outside Scarborough that goes north to Whitby, and along a bridleway in the North York Moors. However, I wasn’t up for such escapades this time (heat and fatigue, I think). They will just have to wait for another occasion … and we didn’t really miss not doing them!

above Marine Drive

above Marine Drive

Getting My Hands Dirty

Last night, I lay on the settee, utterly exhausted, my legs lying useless in front of me. However, I felt totally content: I had spent the weekend gardening. Obviously, I hadn’t been ‘gardening’ to the extent that most people mean by the term but it had sure jiggered me probably more than it does most people – and I’ll bet I got at least as much pleasure out of it!

I love geraniums!

I love geraniums!

This summer, Pete and I have been around more than usual for one reason or another and we have turned our eye to the garden, or the jungle that it had rather become. We were lucky to have more time at the same time that there has been less rain (unlike two years ago when it never stopped) and Pete’s Knee wasn’t playing up (unlike much of last summer).

more geraniums

more geraniums

So, armed with new tools, we have been able to fight back the brambles, grass and next-door’s ever-encroaching hedge, and parts of the garden that I’ve not seen for three summers have now reappeared! It’s been marvellous, and we’ve even had sun to enjoy it with.

I content myself with smaller amounts of clipping but have many bramble scratches to attest to my efforts! I’ve also been eyeing up a space close to the back door that has now appeared thanks to Pete’s major attack on a particularly virulent section of hedge.

This weekend I had the chance to go to the garden centre with a friend and I went armed with a list and plans for the new corner! It was lovely to be able to buy some plants again and work out what would work where. (I have learnt through trial and much error over the years but am very much still learning!) Once home, I set out my wares on the garden table.

my purchases

my purchases

Then I sat for a while in the lovely shade, deciding whether I could brave the sun and do some digging. Eventually, I broke cover and managed to dig one hole and plant one plant before retreating, beaten by the heat. I did manage to find a home for the owl I’d not been able to resist though!

garden owl

garden owl

On day two, I was in the garden before the sun and made the most of the actually rather fresh and breezy (and rather pleasant) day, and got all the other plants bedded in before allowing myself to take any notice of my body’s loud complaints. When I did sit down on the garden chair I couldn’t move from it for a considerable time. It didn’t matter though, as I had no desire to do so: I had a cup of tea in my hand and was in a good position to appreciate the extra splashes of colour that had appeared.

Verbena and Diascia

Verbena

Veronica

Veronica

Later, having shuffled inside to the settee, I watched the conclusion of the Tour de France. Since all those riders had made the effort to cycle round Yorkshire, I thought I’d make the effort to watch them on the television as they continued their Tour in France. It was crazy to keep on thinking, after one week, after two weeks, after three weeks, that these were the same riders who had cycled down our local roads – and were still cycling in the same race! Madmen! It was good to see Vincenzo Nibali on the winner’s rostrum, having first won the yellow jersey at the end of the day on which we saw him (I use the word ‘saw’ very loosely!).

As a bonus, when I woke up this morning I discovered that it had rained in the night so I reckon I don’t need to water my new lovelies today … possibly! Which is fortunate as my legs are still refusing to play ball. Now that’s not allowed – I’m much less keen on another day of immobility! I’ll just have to take another cup of tea outside and remind myself that it will be worth it: this will pass and the flowers will stay.

Diascia

Diascia

Being EMpowered: Part Two

Aberffraw

Aberffraw, Anglesey

So … being interviewed by Tom. I shall explain! On the Saturday evening we watched a film that he’d made last year, ‘Brew, Sweat and Gears’, which told the story of how Simon had come to start EMpowered people, and of the charity’s inaugural Coast to Coast trip. It was both moving and inspiring. Television companies have shown an interest but nothing has so far come of it … so Tom’s now making another (even better!) film and was conducting interviews during the course of the weekend. I can only say that I had some Dutch courage before my interview!

spot the camera!

spot the camera!

We also found cameras lurking in unexpected places all weekend. We shall see what happens next!

the refreshment team

the refreshment team

Away from the limelight, cycling began under darker skies. Fortunately, I’d been given the inside information that the best part of the day’s ride was after the morning’s rest stop. So I jumped aboard the refreshment van for the first eight miles and enjoyed looking at the countryside, whilst keeping warm. It was also good to be able to see more of the work of the support team. They stuck arrows on lamp posts at each junction (and the final van took them off again) and when we arrived at the rest stop at Aberffraw they raced around putting out food and putting kettles on ready for the first arrivals … Martin and his support riders (of course!) – and and they weren’t far behind us.

the refreshments were very popular!

the refreshments were very popular!

Everyone looked rather cold and I hid in the van as long as I could. Frozen cyclists hopped in and out to join me and I had a quick chat with Ian, who also has Parkinson’s and is also a little mad! I understand he kept his support riders entertained (or groaning!) with his terrible jokes all weekend. I was largely spared (thankfully!).  Finally, the moment arrived when I had to leave the warmth of the van and join Pete on the tandem.

We headed off between sand dunes and along miles of empty cycles paths. It was beautiful wild countryside.

setting off through the dunes

setting off through the dunes

It was wonderful to be so out in the wilds, on open paths without even the possibility of cars. We all cycled along at our own pace, groups of us joining together then drifting apart, chatting with new people, or quietly looking at the scenery. We cycled beside a dyke and followed a river for miles. It was all very peaceful, despite the ever present threat of rain.

river Cefni

river Cefni

carrying the trike over a not accessible gate

carrying the trike over a not accessible gate

We did encounter a problem at one of the gates along the path – they were supposed to be accessible but one proved not to be so for several of our bikes, including the tandem. Our handlebars seem to stick out further than some bikes and the length of the tandem makes it not very manoeuvrable. We were very grateful that there were so many pairs of hands to help (especially me!).

Shortly afterwards, Theresa had need of one of the support vehicles – she had injured her thigh and could not go on. In fact, it was the film crew’s van that came to the rescue on that occasion! It was at moments such as those two that you really appreciated the importance of the support provided, and which made the weekend possible.

the entrance to the Dingle

the entrance to the Dingle

We regrouped at the far side of LLangefni. Before us was the Dingle. This was a beautiful woodland dell which had two paths running through it, one of which was on raised wooden slats and was wheelchair accessible. We’d been given permission to all cycle through this section. Now, you’d think this would entail a quiet meander through the trees. But no, we seemed to hurtle along at high speed, twisting and turning as the path turned sharp corners that were all boxed off, with wooden railings rising at either side. I felt like I was on a rollercoaster and had to remember all I’d said to everyone about totally trusting Pete whilst on the back of the tandem! I was also holding my hands on the centre of the handlebars as the sides seemed very close!  To cap it all, I had to keep smiling as cameras seemed to be hiding among the rocks and trees where least expected!

emerging from the woods

emerging from the woods

When we emerged at the other side I heard Pete say that he took the journey steadily – so I’m clearly easily alarmed!

I do have memories of woods carpeted in green, with bluebells peeking though with the odd glimpse of a wooden carved creature peering out at me. All gone in a flash – though I did insist on a photo stop! It was a really pretty section of the journey.

Dingle woods

Dingle woods

Simon racing out of the woods

Simon racing out of the woods

We continued cycling by the side of Cefni reservoir before stopping for lunch at the edge of woods. Once I got off the bike I could feel how wobbly my legs were and stayed sitting down on the ground for some time before staking my claim in a support van again!

As I sat contentedly in the van whilst it meandered along quiet lanes, I could feel fatigue creeping up through my body. I knew that if I was to be sensible I should stay there for the rest of the day. However, there was no way I was going to be sensible!  Miss the last few glory miles back to the hotel at the end of the trip? No way!

Ian still going strong

Ian still going strong

So I slipped out of the van again with three miles to go. I think Pete’s ‘support riders’ were pleased to have someone to support again! There was some amusement at my appearance and disappearance through the weekend. I also heard that Pete continued to use the electric motor on occasions when I wasn’t there, which I think really must be against the rules!

It was lovely to look up from the bike to see people around us whom we had got to know at least a little over the weekend. It was great, too, that we were all wearing the same kit; we were all one group cycling together, with a variety of bikes. It didn’t matter who was a support rider and who was being supported. Indeed, some support riders were using electric wheels whilst some EMpowered cyclists were not, it really wasn’t important.

Pete powering me home!

Pete powering me home!

As we each arrived back at the hotel there were many individual achievements – Alex did cycle the entire two days’ route, without use of any shortcuts; Glynnis, having cycled only a dozen or so miles at once in the past, made it round the whole route; and Theresa’s sister, there to support Theresa, cycled further than she had ever done before. As for me, I was shocked (and chuffed!) to discover that the long morning section I’d cycled was 14 miles! So, I’d cycled 17 miles that day, after 16 the previous day – definitely a record for me!

the finish!

the finish!

I have to say though that one of the best things about the weekend was being able to be outdoors for two whole days – not easy to achieve when it’s difficult to get out under your own steam! It’s also left me with a warm glow, even several days on. My head still feels very well aired!

peaceful Anglesey lane

peaceful Anglesey

Being EMpowered: Part One

at Four Mile Bridge

at Four Mile Bridge, Anglesey

You may be thinking that, as there have been no further posts about training for the Tour of Anglesey, I was so busy doing the training that I didn’t have time to write about them. You would be wrong! There have been no further training rides. That was due to a brief occurrence of Pete’s Ankle (not to be confused with Pete’s Knee). It came and went over precisely the same days we could possibly have cycled. Such is life!

Anglesey countryside

Anglesey countryside

To be honest, I don’t think more training would have made any difference – my concern has always been getting over-fatigued and coming home so exhausted that I’d be in back in bed for days. That was the beauty of this trip for me – I could just do parts of the route.

modelling the kit!

modelling the kit!

We were staying in Hotel Cymran, near the RAF base at Valley. Friday evening was spent getting to know some of my fellow cyclists, eating a very tasty meal and getting kitted out. Yes, we were all given our own cycling kit! Simon, the founder of EMpowered People, obviously has a winning way of getting people to help the charity!

Martin has too much energy!

Martin has too much energy!

As I looked around the table on the Friday evening, five chaps stood out as having very rosy, wind-blasted faces. Apparently, they had done a bonus day’s ride already. It turned out that, although the main event was two days’ cycling on Anglesey, one of the EMpowered people, Martin, had considered that to be insufficient challenge for him. So a Day Zero had been added, consisting of a ride through Cheshire and along the North Wales coastal route – this was 110 miles: more than Days One and Two combined!

Martin has Parkinson’s disease. He is also a demon on a bike! His support riders had trouble keeping up with him all weekend and he relished the challenge of beating them!

Whilst I wasn’t envious of them having cycled such a distance, it did make me itching to get going on our own first day’s cycling.

Amazingly, bearing in mind the dreadful weather forecast, Saturday morning dawned dry. There were even glimmers of sunshine! We gathered in the forecourt of the hotel for a photo opportunity before the day’s cycling. It was only at that point that I realised how many of us there were.

gathering before setting off

gathering before setting off

 

the team!

the team photo

Besides the EMpowered riders, there was the support team, comprising friends and family of the riders, with a strong showing of Simon’s friends who have cycled with him or motorbiked and car rallied with him over the years. In addition, there were riders from Quest 88, a company that provides therapy products including bikes, and which was instrumental in getting EMpowered people off the ground. Our numbers were swelled further that morning by the arrival of some younger folk who work and/or live on the island.

our support riders

our support riders with Glynnis on her trike

There was a mix of cycles, too, including two hand cycles, a trike, several electric bikes, our own electric tandem and a red spotted bike. As the chap who interviewed me said, it had the look of Wacky Races! (Ah yes, being interviewed … more on that whole subject later …!)

We headed roughly northwest, over Four Mile Bridge, where the sun came out, and then along the beautiful rocky shoreline round Treaddur Bay. The wind was quite strong there, whipping the waves up so that they crashed along the rocks, and blasting us with salty air.  It was a great stretch to cycle along, although those without electric wheels thought we had an unfair advantage up all the hills on that section! It was very much an up and down part of the route!

Treaddur Bay

Treaddur Bay

Soon afterwards we arrived at our morning rest point where the refreshment team were ready with welcome hot drinks and snacks. It was also a good chance to chat and swap stories. Glynnis, using her trike and with an artificial leg, was feeling good after the first section and was still keen to get round the whole route. Martin told me just how much he wants to stay active, and, whilst we may all have been aiming to achieve a personal best over the weekend, for Martin it was definitely a race – against everyone!

refreshment stop

refreshment stop

chatting to Glynnis

chatting to Glynnis

Having done what I considered to be a respectable six miles, I hopped in one of the support vehicles at this point, along with Theresa, one of the hand cyclists, and her sister. We were in the final vehicle, and followed Alex, another hand cyclist, whose aim that weekend was to do the whole route. He made a good start that morning.

Alex with support riders

Alex with support riders

the dressed windmill

the dressed windmill

We rejoined the rest of the party at lunchtime, at a cafe in a windmill, which was inland from the part of the morning’s route I’d done. The flour used in the food had been freshly milled on site, and the windmill itself was decorated in bunting as it was windmill dressing day on the island. The breeze kept the sails going at a smart pace! It was good to be back with everyone again, and the three of us who had rested were all raring to go. I’d had enough of the inside of a van – I was in need of some more fresh air!

getting ready for the afternoon cycle

getting ready for the afternoon cycle

Those with most energy did the longer afternoon route, including Martin (of course!) and Alex. I thought the 10 miles for the shorter route was quite enough! We had an enjoyable afternoon cycling through  country lanes full of bluebells and cow parsley. Our support riders were those living and working on the island and were able to give us little snippets of local information, including inside gossip on Kate and William’s time of living at the RAF base … my lips are sealed!

Teresa conquering another hill

Theresa conquering another hill

afternoon views

afternoon views

We arrived back at the hotel, after having cycled round the RAF base, and it was only when I got off the tandem that I realised just how tired I was! A pre-dinner snooze was definitely required!

wetlands near RAF Valley

wetlands near RAF Valley

Part two to follow … with an explanation of why we were being filmed all day and the revelation of my total mileage!

 

 

MS Life 2014

Wow! My mind is still spinning with everything I experienced at the MS Life event which took place in Manchester last weekend. I’m having to refer to all the leaflets I collected to remember what I did!

Fortunately, I’d read the details of the different talks that were taking place during the day in advance. It had taken me a while to decide which of the many on offer I wanted to attend. There were five on at once that I’d have liked to listen to!

the vast venue is a former railway station

the vast venue is a former railway station

So, through the course of the day I went to three talks. The first was on research taking place into myelin repair, by Professor Robin Franklin. He made the whole subject understandable to us non-scientists and, without getting carried away and bearing in mind the timescales involved in scientific research, it sounded like progress was being made.

Later, I attended a session on memory and how to improve it. That involved an overview of an online tool that has been put together by a professor of neuropsychology and is on the MS Trust website at: http://www.stayingsmart.org.uk/.

At the end of the day, when I was wilting somewhat (!), I attended a talk on pain and its management by a specialist nurse in that area. She was engaging and informative. Some of what Donna was saying can also be found in MS Essentials booklet 17: Pain and sensory symptoms. (The MS Society has a booklet for everything!)

In between, my friend, Lynne, and I enjoyed chatting with other attendees and sharing stories.  I even met a couple of people whom I’ve previously only communicated with online. Whilst the online community is fantastic, it is always good to put faces to names and to see people in person.

wheelchair dancers

wheelchair dancers

 

As we wandered through the many varied stalls, we paused to admire a demonstration of wheelchair dancing. It looked fun and you could have a go yourself. Later, we saw a couple of very professional-looking dancers, the woman in a chair and the man not. They danced very elegantly and smoothly together.

The BTO (British Trust for Ornithology) had a stand and gave helpful  tips on how to site a bird table in a way that minimises the possibility of making bird sitting targets for cats (a fear of mine as most of our neighbours have cats).

Checking my leaflets, I’ve remembered that I’ve signed up to receive information from Sportability … I’m not sure how I’ll fit any more activities into my hectic (well, severely managed through pacing!) life but I really liked the look of the quad bikes! Watch this space!

I also had a chat to a slightly mad (but in a very good way!) fundraiser, Duncan. Duncan’s wife organises a “ten in ten challenge” – 10 Lakeland Peaks in 10 hours, whilst Duncan, who has MS himself, does his own water-based challenge, one of which has been to swim 10 of the Lake District’s lakes … now, that is what I call a challenge!

demonstrating the Mountain Trike

demonstrating the Mountain Trike

There were several stalls with some form of mobility vehicle, one with a wide range of bikes, including a three-wheeled tandem! Another was all about a Mountain Trike, which looked pretty awesome and could take you over rough and hilly terrain, and even sand! I had a go and it felt really comfortable and satisfying to use, and the engineering involved looked impressive. You use levers to pull yourself forward, and the only drawback I foresaw for me (apart from the price-tag!) was that it would be quite fatiguing after a while. Great fun though and nothing like a wheelchair!

I imagine that if you asked any two people their experience of the day it would have been different, as there was so much to do. I wished I’d had time for one of the cookery demonstrations, and I would definitely have appreciated one of the massages! I will just have to come again in two years’ time!

P.S. We also received a free pack of four nail varnishes which I have since been putting to good use!

modelling three of the four nail varnishes!

modelling three of the four nail varnishes!

The Training Begins!

The training is for the Tour of Anglesey, of course. However, our first excursion was only five miles’ long and we had such a lovely ride out, that I’m not sure I can really class it as training!

Nevertheless, it was wonderful to be back on the tandem! It was the beginning of January when we were last out – in very different temperatures, which necessitated more layers of clothing and fewer stops!OLYMPUS DIGITAL CAMERA

In fact, on this ‘epic’ journey into our nearby woods, we managed three stops! They were not required due to me needing a rest, I hasten to add! It was because the weather was so lovely that we wanted to stay outside for as long as possible. We sat out amongst the still bare but beautiful trees both on the way out and on the way back and watched families trekking by. Here and there we spotted the odd bluebell, but mostly they seemed reluctant to appear yet.

a rare daffodil sighting

a rare daffodil sighting

The middle stop is the essential one – the cafe! It has the added bonus that we can embarrass our daughter both simply by arriving at her place of work and, additionally, for extra points, by arriving on a tandem! (I think she is actually resigned to the sight of us now and even acknowledges us when we arrive!)

I am really appreciating the various outings that I’ve been able to achieve recently, after so much time indoors. The only down side is that it’s possibly (definitely!) been too much, too soon. I’ve had to rest a good deal since, and do some extra prioritising, but, well, you have to seize the day, and I can incorporate more rest into my days to compensate. It’s definitely a worthwhile balance!

 

I Can Stand the Rain

I have been sitting in a field again and it was great! I was actually there to do some archery but that seemed a secondary consideration to being outside … for a whole afternoon!

I hadn’t planned on staying for long, especially as I wasn’t sure I’d still be able to remember what to do! I thought I’d be able to just shoot a few arrows and watch everyone else while I supped my flask of coffee. But, no, a score sheet was thrust into my hand and suddenly I was doing maths again and trying to do some consistent shooting. Let’s just say the results were a bit mixed.

It rained too which was also lovely – honestly! It was a very fine drizzle but it just seemed to wake me up and it also underlined that I really wasn’t sitting inside for the first time in a while!

Okay, I’ll admit that we did all have to retreat into the club hut for a while but that provided an opportunity for a chat about the Tour of Anglesey. Funnily enough, two members of the archery club are also coming along on the Tour, as essential refreshment providers. I learnt some useful information about how more opportunities for shortcuts have been incorporated into the route. I think I’ll be availing myself of those (as well as the refreshments!). I’m getting excited about it now, especially as my energy levels are rising all the time (thankfully!).IMG_1024

As I left the archery field, I paused to appreciate the allotment on the other side of the path. I particularly like that there’s plenty of appropriate seating!

Stretching Myself

One of the best pieces of advice I received around the time of my diagnosis was to try out yoga. I decided to give it a go, found a class and turned up one day, a little nervously. I was slightly intimidated by everyone else who seemed to know what they were doing and effortlessly moved their bodies into a myriad of intriguingly named positions (eagle, sphinx, triangle …). I was not sure that I would be able to do any of that!

Several years later, I still attend Caroline’s class regularly. Her soothing voice and relaxing manner are a part of my life. I have moved with her from Methodist hall to Anglican Church hall, to fitness gym to an actual yoga centre, but, through it all, the movements and sense of calm (apart from the dance music thumping through the floor at the gym!) have remained constant.OLYMPUS DIGITAL CAMERA

And I have actually improved over the years! I started very cautiously, missing out postures that looked too ambitious or where I needed to rest and regroup, but I gradually found that my strength and stamina were improving and my fatigue was reducing. (My balance isn’t all it was these days and the wall is a useful friend, but my body remains much more supple.)

I also find that yoga chimes in with the advice given about exercise and MS: to listen to your body, to do what exercise feels right for you, to go at your own pace. The best bit is that there are regular inbuilt rests – I love curling up into child’s pose! The weekly practice builds up gently, then before you know it you are standing firm in warrior posture or upside down in dog. It all feels perfectly balanced too: an even numbers of stretches and twists on each side of the body, and equal concentration on forward and back bends. I lie down for the relaxation at the end of a class feeling thoroughly stretched in all manner of ways and very glad not to move for a while!
OLYMPUS DIGITAL CAMERA

I have recently discovered, however, that yoga has not just become an enjoyable part of my life but an essential part of my life! After observing how my body stiffens and complains after a few weeks away from the class over summer or at Christmas, I have realised that a few (gentle!) stretching exercises have to be incorporated into my life at regular intervals.

Yoga has kept me sane(ish) during this most recent envelopment in a cloud of exhaustion. Although I’ve not been able to go out on the tandem or keep up with my swimming, I have been able to straighten my legs into the air whilst lying on the bedroom floor and breathe gently. Which reminds me, must dash! (Or move with awareness down to the ground!)

Promise of Spring

I’ve felt like Sleeping Beauty recently – well, at least the Sleeping part! I have slept and rested, and rested and slept. Time has passed. Brambles have not surrounded my home; instead, during the time that I’ve taken to my bed, the rain has ceased its pounding of the windows and the sun has begun to smile on my world.

I’ve taken my first tentative steps back outside. This has mainly consisted of sitting on the doorstep, but I have also gingerly stepped over the threshold of work. I am beginning to feel part of the world again.

Another reason for looking forward with optimism came as a result of a recent phone call, which awoke me from my slumbers and cheered me hugely. It came from the founder of a charity, EMpowered people (http://www.empoweredpeople.co.uk/), which aims to inspire adults with disabilities to take up cycling. A browse of the website is recommended, especially the videos! The charity promotes the use of suitable bikes, including power assisted and otherwise adapted bikes, as appropriate for each particular rider. So, something very much after my own heart.

 It just so happens that the charity’s founder, Simon, lives only a few miles from me and he also happens to have MS. We have previously met up, when he explained what the charity was about and told me of various events that the charity arranged throughout the year. One such upcoming event is a two-day cycle ride around the Isle of Anglesey. I had demurred from this, thinking that my being able to cycle a mere five to twelve miles made it beyond my capabilities.2-Bee-or-not-2-bee-23

It turns out that this is not the case. The ride is organised in such a way that I can dip in and out of the cycling, depending on how my body is feeling. The event is fully supported and there will be riders with a variety of disabilities involved. The phone call was to clarify any potential problems, and for me to be reassured and then confirm that Pete and I would go for it! So, we now have a trip to Wales in May to look forward to – and an added reason for me to be careful to pace myself to ensure that I’m fit enough to be able to go!

So the tandem continues to take us into the unknown! In the meantime, the crocuses have awoken too. OLYMPUS DIGITAL CAMERA

In Retreat

My body has been speaking out; basically the message has been “Stop!”

I tried the gentle approach: reigning in my already pared back life – cancelling my, oh so hectic, social engagements; resting for ever longer periods; focussing on fewer things at work.

It’s not been enough, So I’ve listened, and I’ve been signed off work. It’s a great relief. I can lie in bed for as many hours as I want … which is quite a lot.

Happily for me, storms have been raging outside. It saves me the effort of personal raging – not that I’ve got the energy.

I’m trying to let it flow over me. Relax. It will pass. That’s what I’m telling myself …

Meanwhile, the spring bulbs are not retreating.OLYMPUS DIGITAL CAMERA

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