For a large percentage of Fibromyalgia and CFS sufferers, we lead a sedentary life style to try to prevent more pain and chronic fatigue. However, we are inadvertently causing more pain and other prominent symptoms. We soon find ourselves on the pain – fatigue – stress – sleep disturbance – stiffness – fog cycle. In our minds, exercise becomes unachievable.

 Sadly, with us unable to exercise the conventional way, our muscles decondition and become tight and painful and in turn makes us become more at risk of trips and falls, especially during flares and crashes when we are at our weakest.

From when Jane Gordon our treasurer and I qualified as Tai Chi for Health instructors 3 years ago, our priorities were to reduce the risk of trips and falls. There is also an added bonus because as we improve our strength and balance, our muscles and joints become less stiff and more flexible, helping to reduce pain.

Exercise is Tabu

I have read on many forums and face book pages where sufferers are unable to exercise as it causes more pain or they are afraid to exercise as they will lose their benefits and be forced back to work. Just because we are choosing to do something about our health, it doesn’t mean we are cured or able to work, it means we respect ourselves enough to want to improve our symptoms so that we can have some quality of life, after all, we need our bodies for a few more years yet! If you keep reading comment after comment that you can’t exercise because it causes pain, you will start to believe it before you have even considered it. This adds to the ever-increasing obstacle of lack of motivation, confidence and understanding to overcome.

Yes, I agree that if you have not exercised for a long period of time and spend most of your hours per day on the sofa or in bed, there will be a degree of discomfort when you first start exercising and it will be foreign to your muscles. The key is to start at a very low intensity, practice regularly throughout the week and only increase the intensity when your body is ready. Compared to deconditioned pain, this has to be seen as positive pain as you slowly build your muscles up again. You have to have a degree of hope and determination to get through the early days.

Movement Therapy

To ensure we don’t boom and bust, we also need to look at the type of exercise that we can do without exceeding our limitations. Identifying the type of movements, balance and strength exercises that will benefit us the most without causing extreme levels of PEM, Post Exertion Malaise and increase our pain levels?

Tai Chi and Qigong, Pilates, Yoga, swimming and gentle walks are all recommended as low impact exercises that help build healthy muscles and tone and strengthen our core muscles. Tai Chi especially offers all round benefits for both mind and body, helping to reduce stress. It is challenging to start with as we have to remember the moves and find some sort of coordination. Once you have completed a course it is very rewarding.

Like anything, practice improves performance and when I first started learning tai chi, I wondered why I was putting myself through the classes because I had very low energy levels, I couldn’t stand for more than a minute, I couldn’t hold my arms up and my fatigue levels made it difficult to follow. I am so glad I put myself through the first few weeks and it helped that I had my Fibro/ Tai Chi buddy, Jane to encourage me to keep going. The classes were so beneficial, it got me out of a mobility scooter and walking again and this was a key factor in bringing tai chi into the group programme and us both becoming Tai Chi for Health instructors with an extra Falls Prevention component.

What is Otago?

Otago is a home based strength and balance retraining programme, researched and developed by a team at Otago University in New Zealand. It has been proven to decrease the risks of falls by up to a third with people aged over 65 years. It has been designed so that participants can be prescribed individual exercises to be done conveniently throughout the day anywhere in the home. While you are waiting for the kettle to boil, you can fit in a cheeky one leg stand or heel walk to the sink.

The exercises are simple leg raises and steps which make you mindful about how you walk and stand. They progress from seated, fully supported to one hand support and no support. Further progression incorporates ankle weights in the strength exercises that start at 1Kg up to 5kg and increasing repetitions.

These exercises are perfect to help gradually build the strength and balance in our fibro legs. There is no set time so we can pace ourselves throughout the day and if you chose to do them all at once, it takes just 30 minutes. The balance exercises are also a great foundation for transitioning to the tai chi.

There is an initial assessment that will give both the instructor and the participant a foundation to work from. Exercises are prescribed to do 3 days a week and on the in between days, you are encouraged to go for a walk either for 30 minutes or broken into 3 x 10 minutes, depending on your fitness and capabilities.

Although Otago is designed for the home, we will be running classes so that everyone can come together for a bit of a social outing, especially after lock down. When they have reached the top level of Otago, they will have the option to progress to the tai chi for arthritis classes.

Falls Ambassador

In between all this tai chi and Otago training, Jane and I have attended a Falls Ambassador training session. This has given us the chance to attend the Train-to-Train course, so we will be able to run falls awareness sessions for group members and students. We will also be looking at running a small falls prevention awareness event at our hall at some point in the future.
Having an all-round awareness of falls prevention is adding so much value and depth to our programme. We are able to help members and students of all ages and abilities. By tackling the potential issues early enough we will be able to help reduce the risk of trips and falls and prevent the consequences. Our aim is to build the confidence and capabilities of everyone at their own speed.

In the next article we will be looking at how our Walking to Awareness Day campaign is going. This is a virtual walking event run over 6 weeks, encouraging members to upload their steps so we can collectively reach a target and improve our walking and fitness which fits into the Otago programme and our weekly walks which will be finally happening again! Yey! If you would like to join us please visit our activity page to find out how you can join in.

Hello and welcome to my first ever blog.

I am Cheryl, Mum, Dad and carer to my two, not so kid like kids, they are George and Bridgitte 21 and 18 years respectively.

My life has always been stressful. I have been a single mum for the past 14 years. Being a single mum is hard enough, but being a single mum to someone with Tourette’s is on another level. That’s George, for the best part of 10 years he had rages like a two-year old’s tantrums, but they go one for hours and are exhausting to both he and I. Luckily his Tourette’s calmed when he hit puberty and he is just George with a few motor tics. Some of you may have seen him photobomb a zoom session, he’s ace, if a little unpredictable! 🙁

Then there’s Bridgitte, Bri from now on, the most independent baby toddler infant you could wish for. She would spend hours just sat playing with toys, albeit the majority of them belonging to her brother. A super intelligent child who won best all rounder medal at her primary school leavers assembly. Excelled when she moved into senior school with headteacher award nominations and teachers asking her to pick ‘their subjects’ when it came to choosing her options. She’s musical, plays clarinet and saxophone.

Then suddenly one day when she was 14, complained of pain in her side. It was a summers day and she was wearing a crop top and shorts, she didn’t look right, so I took her to get checked. They thought she strained a muscle and that she’d be fine in a week or so. What we didn’t know was that strained muscle, was a muscle going into spasm that would never release. It pulled her spine into a scoliosis, but not one that anyone had seen before! It’s not massive but causes lots of pain and she has mobility issues because of this.

At the time, I had my dream job, it wasn’t much but to me it was special. I worked on the beautiful campus that is Trent College in Long Eaton. I fed the ravenous 6th formers when they had a break from their studies. They were mischievous but fun to be around. It was a job I could see myself retiring in, but with countless medical appointments and school being unable to cope with Bridgitte’s pain, I had to give up that job! My job, the job that made me be me, have a friendship circle, have my own earned finances, all gone because school couldn’t cope!

So, for 18 months Bri was homeschooled with me chaperoning and then going to which and whatever appointments happened. Many happened several times a week. I was lost, I had lost my identity, my mental health and my ‘so called’ work friends. Everyone fell by the way side and I was no more than a carer. A carer who had to advocate for my daughter at every appointment, with every specialist and we’ve gone round and round and then I stopped! In all of this, I had forgotten to care for the carer and I was getting more and more poorly until I stopped! I took a break from all the appointments and just concentrated on getting better. Bri had turned 16 and even tho She was only getting 5 hours of tutoring a week, she passed all 7 GCSEs that she took, 5 of them with the highest grade she was put in for. I said at the beginning she was Bright! She could go to 6th form.

With less hours she could manage, but it meant taxi-ing her to school in the morning, home an hour after back again, in the afternoon and to whatever appointments she had as well. Something had to give and again that something was me!

Bri was also falling behind in her subjects and her attendance was horrendous, as other health issues popped their heads up and mine were just kept at simmering point. We had a discussion and she dropped a subject at 6th form. It was the best thing for both of us. I had one or two hours a week where she could be left and I wanted to make them count.

I knew that Fibro Active were running tai chi sessions down at Petersham Hall, and I wanted to do something that would help me relax but also strengthen my body because all I was doing was sitting, either in a car, in a hospital chair or at home trapped.

I’d had my own muscular skeletal issues for 30 odd years, with 20 years paying osteopaths and acupuncturists out of my earning but, now they were gone. I’d had spinal surgery in 2013, which was a complete success but they didn’t provide me with physio afterwards, which left the wrong muscles doing the wrong jobs. I had tendons ceasing up at the sight of a repetitive task. Everything was going wrong. I saw physio after physio and the exercises to strengthen one, would cause an issue with another, until I met my last consultant physio. They explained the last 30 years of my life in two sentences; your muscles have increased tone and are never at rest.

It was like a lightbulb had been turned on, that’s why I had chronic fatigue. He recommended you’ve guessed it, tai chi. So, I arranged to start the new Yang style course that was starting only a couple of weeks later. In the meantime, I’d asked my doctor to refer me to rheumatology on the advice of the physio.

The day of the first session of tai chi came around, and I meekly made my way into the hall and sat by myself. I wasn’t used to doing people! People scared me, but I stayed and we did some warming up, and some qigong and learned how to walk in a way that’s now very familiar. Week 2 came about and I learned a bit more, and a bit more week by week, I couldn’t get it!! I was so angry and frustrated with myself because my elderly mum knows two forms all the way through, and I was likening myself to her. I was beyond frustrated, but I kept with it after Julie’s encouraging words.

In March, I had my rheumatology appointment, she went through my physio’s findings and asked for a detailed history and found a whole bunch of other things. I’d thought about these before, but filed away as age or women’s or whatever. She ordered some bloods and did some feeling around my legs and came out with ‘I think you’ve got fibromyalgia darling’. I’d thought so too for the past 2 years, but the words coming out of her mouth were like daggers to my heart.

It’s strange when you believe something one minute, then want to disbelieve it as soon as you hear it said. Blood results were in, nothing shown, nothing ever was! Then it plopped on my doormat on March 9th, the letter. The diagnosis in writing. I was gutted! For the next few weeks, I did everything I could to prove I hadn’t got it, I was in complete denial.

Then lockdown happened and tai chi was moved to this video platform that no one had ever heard of before. Julie and Jane had masterfully arranged a timetable of video tai chi classes and because we couldn’t go anywhere, they did more sessions a week. I was getting better at it and feeling better too. The usual Tuesday morning Fibro Active sessions that I struggled to get to, were in my living room, and at the other end were a bunch of supportive ladies who understood how I was feeling, because they’d probably all felt that too. I suddenly felt like I belonged and people understood, all the injuries I got all the fatigue and downright exhaustion – they understood, and being able to open up about my feelings made me understand too.

Tai chi has helped me find a calmer mind, a space to be free from my worries and duties as for Fibro Active, I’ve not been here long but I know it’s where I belong.

Jane’s Tai Chi Blog Part 2

So, by the end of part 1 of this blog I had finished at the point where Julie and I were having lessons with Chris and Chris was coming once a fortnight to our group meetings to teach our members Tai Chi for Arthritis Part 1. This was becoming a very popular part of our programme, but this was itself becoming a problem. Group members were unable to progress far, as new people kept joining each week and we had to keep going back to the beginning.

Julie and I tried to think of ways around this problem, but we were at a loss, we discussed this with Chris and he went off one week commenting that “I’ll give it some thought!’ We just thought that was the end of it and he would forget about it. A couple of weeks later he came back with the comment “I’ve had an idea” I thought this sounded promising, but had no idea what he could have thought of, then he casually dropped his, to me anyway, bombshell of “I think you two should train as Tai Chi for Health instructors!” There was a very long pause before he got a response, Julie took it in her stride, but as the saying goes, I was ‘gobsmacked’!! I don’t know what I thought he was going to say, but it wasn’t that!

In part one of this blog I mentioned that I was shy and nervous, well I have got a bit better with age, but this was so far out of my comfort zone that it might as well have been in another galaxy! On the other hand, I knew if I backed out, I would be completely disappointed with myself, so in a state of great fear and panic I decided to give it a try.

Training

Julie and I had about three months before the training course, so plenty of time to perfect a form that we already knew well, but I knew I needed some extra help, so I asked one of my doggy walking companions, who happened to be a hypnotherapist if she could help. Sharrie, from Think Hypno helped me immensely, she built up my confidence and taught me coping strategies that could help me in situations that make me nervous, not just tai chi training courses.

Strangely, the thought of teaching a class did not worry me anywhere near as much as the training course, but I survived thecourse and came out with my certificat

es. Angus, my husband, came to pick us up from our course and commented that we were a bit quiet, so we let him think I had failed. We were both just extremely tired, but poor Angus spent the journey home trying to work out how he was going to cope with my disappointment. I let him off the hook just as we reached home! In all my exams and college courses that I have completed throughout my life, this was, for me my greatest achievement. Tai Chi has given me both peace of mind and my biggest challenge!

Strictly No Falling /Age UK

At this point in time, we only intended teaching our Fibro Active Group members, but very soon we were approached by Jo from Strictly No Falling, she asked if we would consider teaching a course for people with balance issues and Strictly no Falling / Age UK would sponsor us. We thought about it and decided that we would do this, as it would earn us some money to support Fibro Active, especially as the subs taken at our weekly group meetings were not quite covering the room rent.

Our first open class was launched at ‘Spring into Action’ an event jointly hosted by Fibro Active and Strictly No Falling. We had a lot of interest at that first taster session with about 29 people attending; I think it was a record for Strictly No Falling! Julie insisted that we do a demonstration of Tai Chi for Arthritis Part 1 & 2, we both thought that the only ones watching would be those doing the taster session, imagine my horror when I turned round and the rest of the Spring into Action stall holders and attendees were watching!!

But guess what? I survived it!

From the beginning of this first open class we have progressed to teaching 4-5 classes per week.

Tai Chi in the Park

Another of our ideas was to have an informal practice session, with no teaching, on the last Saturday of the month, we started this last year on ‘World Tai Chi and Qigong Day’ This first outing was quite successful, even though we struggled through storm ‘Hannah’ and ended up wet and very, very cold! It took me the rest of that day to warm up.

We have continued with these meetings which are open to anyone and have had people from all Tai Chi groups join in, but the loyal core are those in our and Chris’ classes. We are just trying to promote tai chi to everyone and to connect as many tai chi players as possible! Those that attend these sessions all seem to enjoy them.

Covid 19

In all my worrying and catastrophising (not anywhere near as bad as before Tai Chi and Sharrie) would I have dreamt up this disaster! Lockdown meant the end of tai chi and group meetings and the worry of not connecting with our group and tai chi students, some of whom can be quite isolated; but we soon thought of Zoom!

Zoom brought about a whole new way of teaching, our insurance stated that we should be able to see our students all the time, a bit difficult when we teach with our backs to our class! Between us we soon came up with the solution, I have a room large enough for all of me to be seen, Julie doesn’t, so I teach and Julie watches and nothing gets past Julie! We soon had four tai chi classes running plus our group session every fortnight.

Now with the lockdown easing we are about to venture out to our local park to begin real life classes. These classes will have to be small for now, but it is helping to get those of our students and members who can’t do Zoom out and socialising, at a safe distance of course. It gets me out too! I am used to being on my own and I am happy to be this way, but teaching has forced me to engage with more people, and amazingly I find I enjoy it!

Health and Wellbeing

I wish more people would try Tai Chi; it has an image suggesting that it is just for older people or those with mobility problems – but it’s not!! Tai chi is for everyone from very young to old, some athletes use it to help them focus and centre themselves before competitions; it has been used to help with exam nerves in teenagers. The buzzword of now is ‘mindfulness’ and this is what tai chi is! It has been around for thousands of years. However, the west is only just waking up to the benefits. As I’ve said before though, it’s not a quick fix, the physical benefits can be felt within a few weeks, but the benefits to health and wellbeing take a lot longer, possibly for the rest of our lives, but learning and challenging our minds should take forever and it’s never too late to start.

Sadly, there will always be those who say it’s too slow, or it takes too long to learn. One of my friends told me that she “wouldn’t be seen dead doing tai chi!” (It’s not that slow!!) Obviously, they are missing the point; I just hope that as more people start learning, more people will want to learn. If it were to become ‘trendy’, even my friend would probably give it a try!

Confidence

I know that I will never be perfect, I will still mix up my left and right, occasionally suggesting that my students put their left hand under their right foot, I can mix up body parts too! This causes some amusement! But everyone seems to enjoy my ‘errors’ saying that it shows I’m human….but I very much enjoy teaching, I have gained a great deal of confidence since I first started tai chi. There is so much to learn! I know I will never be able to learn all that I want, but I have learned and am still learning different forms and will continue to do so for as long as I am able! Tai Chi has become a very important part of my life; I would be lost without it.

Through tai chi, I have met some amazing people including those who have helped to set up our classes, my kind and supportive trainers and especially all those who have joined our weekly sessions.

As a final note, in a recent crisis of confidence, Sharrie told me to write down all my achievements, and not to forget the Queens Award, as not many have managed that one!

My Challenge

 When I joined Fibro Active, I made a pact with myself, it was to try anything that was offered, even if it was out of my comfort zone, so when Julie announced she’d found a class, much against my “better” judgement I agreed to give it a go. I’m so glad that I did, without being melodramatic; tai chi has changed my life!

Here comes the hard sell from the reformed tai chi practitioner!

It will take around 12 weeks to notice a difference in muscle strength, balance and stamina, although some notice changes along the way. It takes a lot longer, probably the rest of our lives to really start to understand tai chi and its principles. Tai Chi is a way of life; the many forms of ‘Tai Chi Chuan’ are a small part of this. Just ‘playing’ tai chi and devoting the time for this form of exercise will provide a workout for body and mind, it doesn’t matter how good or bad you are at it, it still works. It can be done pretty much anywhere, doesn’t need any specialist equipment, can be done by young and old, it can be practiced standing, sitting and some forms can be done lying in bed and for rehabilitation. It is especially good for keeping the mind active for those of us who are getting a bit older, remembering a longer form of tai chi like the Yang 24 or Sun 73 takes dedication, patience and practice, practice, practice, but it is worth every minute!

Every morning, I try to work through all the forms I know and spend a little time working on whatever I am presently learning, if I don’t get the chance to do this I don’t beat myself up about it, but I do miss it! My days flow better when I practice and somehow, life is more manageable. I know that if I had experienced this Covid 19 lockdown situation and all the stress and business worries that I’m now experiencing, before my tai chi, I would have been in a constant state of worry and panic. Ok, I’m not going to say that I don’t ever get stressed and irritated, but I really am amazed at how calm and accepting I have become.

With this in mind, it saddens me that so many give up tai chi because it is too slow, or too difficult or they cannot remember the moves, but I accept that it is not for everybody.

With this blog, so far, I have tried to explain a bit about Tai Chi Chuan and how much it has added to my life, but it is getting a bit long, so I will finish now. I will write part 2 soon and explain how Julie, Chris and I brought tai chi to our Fibro Active group meetings.

Autumn Dates For Tai Chi Classes

TCA = Tai Chi for Arthritis (Sun Style Short Form) TCB = Tai Chi for Beginners (Yang Style)

Tai Chi in the Park

27th July at 10am is the next date for our informal tai chi practice session in West Park in the floral garden, adjacent to the butterfly gates.  These sessions have been sponsored by Public Health, they are free and everyone is welcome, there is no formal instruction – come and play tai chi!

World Tai Chi Day

World Tai Chi and Qigong Day was on April 27th. As the timelines reached 10am around the planet, millions of people were practicing tai chi and qigong in it’s many forms. Looking on the World Tai Chi site we can see spectacular demonstrations in beautiful settings  around the world.

But for us, World Tai Chi Day dawned, pouring with rain, blowing a gale and freezing cold, thank you storm Hannah! This was not how I had imagined it!  But we set off, not really expecting anyone to brave the weather and were really surprised to welcome around 40 people; some were our students, other were from different tai chi schools and we all joined together and played tai chi!

Thanks to everyone who was brave enough to join in!  I was absolutely frozen by the end and I know it took Julie, Chris and me most of the day to feel warm again, but, everyone said how much they had enjoyed it and all were looking forward to the next one!

Invitation to our BBQ

Thursday 22nd August, 6.30 – 9.30pm, Broad Street Spiritualist Church, Long Eaton NG10 1LF

We are excited to announce our ‘Celebration BBQ’ this August! 

All our Fibro Active group members and tai chi students are invited to join us in an evening of celebration and thanksgiving for the achievements of our support group, Fibro Active and the personal progress of all our tai chi students over the past year.

In addition to the BBQ there will be a raffle, an informal tai chi practice session whilst supper is being cooked for us and we have four mediums waiting to give you a reading, if you would like one.

We are looking forward to an evening of fun and friendship, it would be lovely to see you all!

Julie and Jane