Tag Archives: joint hypermobility syndrome

Good Morning?

The world is awake. I can hear bird song and traffic.

The pain starts in the pit of my stomach, churning and rolling before weaving through my limbs like a heavy, lumpen weight and collecting in my hands and feet.

There are things to do, places to go. “Get up!” shouts my brain. “F off,” grumbles my body.


Time for lunch – a versatile vegetable and bean soup.


“Ask not what you can do for your country. Ask what’s for lunch.” Orson Welles

A brisk walk in the winter sunshine was just what I needed today. A busy Christmas and a very heavy cold over New Year have knocked my energy levels significantly, so exercise has been quite low on my list of priorities over the last week or so. Today was the first day I felt motivated to get back on track, so I donned my running gear at lunchtime and marched around a steep up and down three-mile loop, accompanied by my lovely husband and dog. Lunch needed to be quick, nourishing and warm. Soup! I made this creamy, wholesome and tasty soup for two in around 15/20 minutes.


I used:

A large potato, grated

1 carrot, grated

1 stick celery, grated

1 tin butter beans OR cannellini beans in water

1 cup frozen sweetcorn

1 teaspoon Swiss Bouillon powder (optional)

¼ teaspoon garlic powder

½ teaspoon onion powder

¼ teaspoon ground pepper (I used white pepper)

1 teaspoon turmeric

Salt to taste



I used my food processor to grate the potato, carrot and celery – speed is of the essence when you’re hungry.

Add the grated veg, garlic powder, onion powder, pepper and bouillon to a heavy bottomed sauce pan, cover with water (I used boiling water from the kettle to speed up the process) and simmer.

Blend the beans in a food processor into a thick liquid. I used the water from the can but you can rinse the beans and use fresh water if they are canned in salted water.

Add the beans, turmeric and sweetcorn to the soup. Heat through, serve and enjoy. I sprinkled a teaspoon of vegan parmesan on top of mine.


Couch to (nearly) 5K

I have finished week 9 of the NHS couch to 5K programme. I have run for 30 minutes, three times this week. I haven’t actually run 5K yet though. The furthest I have managed is 4.4 K so I am quite slow. Laura, the coach on the programme, keeps telling me that it is distance, not speed, that is important, so I will keep extending my runs until I reach 5K.

The second run of each week has tended to be a bit of a struggle, but I have kept going each time. Today’s final run felt good and I was tempted to carry on for a bit longer. However, I decided that I should follow the plan, and my pacing rationale, and stop at 30 minutes. If I had carried on I may have crossed the threshold of doing just enough and gone into the boom bust cycle of pushing myself too far and ending up with a flare-up of pain and fatigue. There were plenty of other things to do with the rest of my day so I wanted to finish feeling energised, not exhausted. I am learning!

Nine weeks ago I struggled to run for a minute, today I can run for 30, and enjoy it! I’m happy with my progress and I am looking forward to being able to say that I can run 5K. Soon I hope!

A strenuous run, or a walk in the park?

… it depends on your perspective!

My husband joined me for the second run of Week 7 of my Couch to 5K programme. And has for each subsequent run! The programme and I have inspired him to start running again. He doesn’t need to use the podcasts as he has done a fair amount of running, (including the Great North Run – twice), just not in the past year or two.

It was great to have company, though a bit odd to be followed. He didn’t want to interfere with my pace, and he didn’t know the route so he decided to run behind me. He was very patient, plodding along behind. And as we neared the top of the uphill section of the route I’m sure he was walking – not a measure of his fitness, more an indication of my pace. I measured the uphill section; it is half a mile long!

I have now finished Week 7, and completed the first run of Week 8. We had to change the route this week. We had a lot of rain over the weekend so the path across the wheat field had become very muddy and boggy. Not pleasant or safe to run on. I have been using the route as a dog walk for years and know that as winter approaches the route will gradually get muddier and muddier, so we’ll use it less and less. Our alternative route, which I am going to call the Winter Route, is on a quiet lane. There is a hill, much shorter than the incline in the Summer Route, but steeper; and we run up it twice. It’s got to be good for my fitness, right?

I am now running for 28 minutes. With each session I have run a little bit further than the previous session, and felt more comfortable. At the beginning of last week, I ran 3.4K (2.08 miles) in 25 minutes at a pace of 7.33 min/K (12.5 min/mile). My first run of week 8 was 4.3K (2.7 miles) in 28 minutes at a pace of 6.51 min/K (11.05min/mile). I feel that I am progressing, and that 5K in 30 minutes may just be achievable – at some point.

Lost in the fog

 Not until we are lost do we begin to find ourselves. 

I’m a tad lost in the fog at the moment! Fibro fog that is.

One of my very best friends has a fabulous saying which sums up how I feel perfectly – “my head’s in a shed”. I have manged to miss three important occasions in recent weeks because I have entered into the wrong date on the calendar on my phone. It makes me look, and feel, very silly!

There is a wonderful resource, which I found in the waiting room while waiting for a physiotherapy appointment at the hospital, called The Pain Toolkit. I found it in booklet form but there is also a great website. It is a very practical guide to the self-management of pain, developed by Pete Moore, who himself suffers from persistent pain. You can read more about Pete and the development of the toolkit here.

There are 12 “tools” in the Pain Toolkit. The first one is being “Accept you have persistent pain…and then begin to move on.” It is, arguably, the most important and, in my experience, the hardest tool to implement!

I have changed the wording to fit my personal circumstances. For me it says – Accept you have JHMS and Fibromyalgia…and move on.

Or – Accept you have persistent pain, fatigue, digestive issues, foggy thinking…and move on.

The crucial word here is Accept. The difficult word here, for me, is Accept. There are lots of graphics and articles on the internet, in fact one popped up on my Facebook timeline just the other day, titled “Things Not to Say to Someone Who Has a Chronic Illness”.

Things like
· Snap out of it!
· It’s all in your head.
· It could be worse, at least you don’t have cancer.
· That’s not a real illness.
· Just think positive.
· Have you tried changing your diet?
· It will get better, just be patient.
· You need to exercise more.
· You take too many medications

As I read the graphic I realised that although I would never dream of saying these things to other people I say them to myself – regularly!

It is so easy to believe on the days when I am feeling well that I don’t have JHMS or Fibro. I can go several days or even weeks living in a bubble of denial and delusion which means when a flare occurs it’s crushing.

A metaphor I like to use to describe my situation is this. Imagine a deep dark well, the walls of which are dotted with footholds, to allow access, and scattered around the well, at differing depths, are some ledges. Two years ago I was at the bottom of the well, not coping with the pain and stress. In fact I was digging and making the well deeper! Over the past two years, with help from healthcare professionals and my family, I have managed to stop digging and climb to the top of the well. I have even been able to live for significant periods of time out in the sunlight. During these times I begin to forget about the existence of the well until one day I trip over the edge and fall back in. If I am lucky I don’t fall too far before I land on a ledge where I can sit for a while to get my bearings and start the process of climbing back out. Maybe, just maybe if I keep in mind that the well is always there I might avoid falling down it?