Midwinter Musings

 It's that time of year again, where it's cold, wet and dark outside and I find myself going into a thoughtful state of mind. While I am feeling extra sluggish, sleepy and tired, and facing the daily battle to do what has to be done with the help of my trusty lightbox, my mind turns to the coming spring and what I hope to accomplish when my energy (LOL) returns.

Here are some things I would like to achieve, or be able to do. Not all in the next few months LOL, I am throwing in some "bucket list" type items as well:

1. Exercise regularly and get fit (and find a competent physio to help me with that)
2. Meditate daily
3. Practice the helpful Buddhist ideas I have been reading about, instead of just reading about them and thinking how helpful they sound
4. Take the family abroad
5, Go on holiday alone
6. Go horseriding again. Oh heck, let's go the whole hog and admit that I still dream of owningmy own horse one day
7. Lose weight. Sorry. I just know it will help me feel better and ease the strain on my joints. And yes, I would like to be able to buy decent clothes too.
8. Eat an almost completely wholefoods diet for a period of time and see if my health improves
9. Visit Scotland
10. See the aurora
11. Experience different cultures, visit sacred sites in other countries, and so on, travel, travel, travel
12. Yoga. Still love it, even if it isn't good for my wibbly wobbly body
13. Try Bowen therapy and see if it helps
14. Be able to run. Not to be a runner, that's not a good idea for me, but to be able to run
15. Find a supportive and helpful doctor
16. This one is a bit nebulous but I feel it very strongly- to be able to express myself more in my lifestyle, home and so on, insteadof feeling my life is dictated by the preferences of others. To feel my mind is free to dream and become aware of what I truly want and am drawn to
17. Eat only local, sustainably produced meatand organic, local veg, no supermarket crap
18. Be able to be active in some way in either my local, or the wider community
19. Do something I feel at least a bit good about doing, that brings in some money to help with our currently dire financial prospects
20. See my children grow up and find their way in the world.
21. See my grandchildren grow up and find their way in the world would be even more wonderful. I do not want to die before my time like my dad did (he had a heart attack at the age of 53 and never met two of his four grandchildren)
22. Find some kind of arty crafty thing I can actually do
23. Write poetry again
24. Write a novel
25. Develop an IRL community of likeminded people that I can draw support from, and give support to- maybe a local HMS support group, and friendships with likeminded women
26. Take part in some feminist campaigning
27. Live in an old farmhouse or cottage with fields at the bottom of the garden
28. Successfully grow some veggies.
29. Get rid of The Beast (Peugeot 807) and get a new car that actually works properly.
30. Get singing lessons
31. Perform (singing and poetry)
32. Try some local am dram

It's good to encourage myself to dream, it is so easy to slip into giving up on my hopes and dreams for my life and accepting things will never change. I want to accept that it is as it is, today, now, but at the same time I want to keep hoping and dreaming. My husband once angrily complained that I don't have any hopes and dreams. Well I will say that it is not easy to hold onto hoping and dreaming when parenting four children on a low income with a chronic illness and a spouse with very strong ideas about how life should be!

Sometimes- like this afternoon when I had a fatigue attack (sudden bout of more severe fatigue where I had trouble walking, talking, my face goes numb and so on) in the middle of town and had to struggle back to the car up several steep hills- life honestly seems too hard to bear. I don't mean that I would consider suicide, but I do sometimes feel that given the choice of living or not living, I would prefer not. Of course that doesn't mean I would be happy to learn I was going to die- I desperately want to live a long life and be able to see my children grow up, marry, have their own children, buld their careers and so on. But given the choice between existance and non-existance, I think I might choose the latter. I think that is the number one thing I would like to change in the coming year. I don't seek to be spared from pain and suffering, but I would like, on balance, to feel that being alive is worth it. It feels like it is only just outside of my grasp.

I suspect that the answer lies in living in the moment, and learning to let go. I am looking forward to journeying further into my practices of mindfulness and acceptance in 2013.

Fatigue Days

 Fatigue is not the same thing as "being really tired". Frankly, if you have not experienced it, you really don't know what it feels like. Unless you have been a mother of a sleepless baby, in which case, imagine your worst day, and you are probably somewhere close to what living with fatigue is like. Now imagine feeling like that every day, some days maybe a little better, many days worse. Imagine that is your life, forever, with no likelihood of improvement. All your responsibilities, all the work that needs to be done, is still there, and you feel like that, every day. Alternatively, imagine you are coming down wth flu but have a big work presentation to do. Every day. Sounds fun doesn't it?

Fatigue is relentless and in my opinion, torturous. Sleep deprivation is used as a method of torture for a reason. Sounds melodramatic? If only. I was once told that if I feel tearful at having to do housework, I must have depression, but I disagree. I have had depression, and it didn't feel anything like this. Depression was like a numb kind of misery, an isolation, living behind glass. Fatigue brings a raw kind of pain, there is no numbness, no protective glass, I feel it all, and it is supremely uncomfortable. Basically, any time when I am upright and have my eyes open, I am in a kind of pain. I feel an intolerable craving to lie down and close my eyes, yet at the same time due to the physical strain of keeping going, I feel adrenaliny and buzzy, so it is difficult to relax or rest.

On a good day, the symptoms of my condition will generally include: soreness and aching all over my body, painful muscle tightness in my shoulders, foot pain, random pain in other places such as knees or back, nausea, heartburn, stomach soreness, stomach cramps, other digestive upsets I won't go into, headaches, ectopic heartbeats, dizzy spells, wheeziness, sore eyes, brain fog including difficulty concentrating, thinking and memory problems, plus fatigue of course. On a bad day, and by that I mean what I call a "fatigue day", added to that will be an additional level of exhaustion, marked by dizziness and pronounced fuzzy-headedness with nausea, and a feeling of numbness in my body, particularly my face. I would compare this to the feeling of being drunk, except without the fun part!

Every day I remind myself how fortunate I am to have my family, a home to live in, food, clothing, warmth and so on. Many people in the world do not have their basic needs met. But human beings need more than just the basics of survival. Love, hope, purpose, adventure, fun, joy- all these are heartfelt desires, and I would say, needs, albeit secondary to the essentials of survival. In my life, I rarely get beyond the basics. Caring for my family- school runs, housework, cooking, laundry, grooming the dog and so on, are what my life is all about. My day revolves around whether I can manage to dust the living room or clean the bathroom, whether I can walk to school or do I need to drive. I am thankful that I am able to manage these basic tasks, but there is so much more that I want for myself and for my family.

My husband and I, a while ago agreed that we don't enjoy gardening, because we never get beyond the weeding and mowing the lawn, to the fun part. I think that is a good analogy for what my life feels like. I would like to be able to enjoy doing things with my family, to be able to focus properly when my children talk to me, to feel part of the wider community in the small town in which I live, to feel I am contributing something to the world. There are many issues I am passionate about and it is frustrating and saddening to know that I can do so little. This is made harder when people around me regularly remind me that I am not contributing enough in their eyes. I am not lazy, I am not selfish, and I do care, more than anyone can know, and what I would like is to be reminded of the value of what I am able to achieve, to know that the level to which I am pushig myself is recognised and appreciated. I think that anyone who is caring for others whilst dealing with chronic illness, would like. My comfort is that I am bringing up my children to be compassionate, aware and with a belief in standing up and speaking out for what is right. In that at least, I hope I can make a contribution.

If I could live without guilt and shame, that would make life easier, but it is difficult to achieve that because there is no external measure of pain or fatigue. Unless we could swap bodies with a selection of people, we have no way of comparing one person's suffering with another. When I feel I can't do something, I am making a judgement based on the level of suffering I can comprehend tolerating. But I have no way of knowing whether say 90% of other fatigue suffers could push through at that level, and the problem could be that I am being weak, cowardly, lazy or selfish, for example. There is no way of knowing. With pain or fatigue, the sufferer must always make a judgement in drawing a boundary as to what they can handle and what they can't. The only thing I have to back up my judgements is that if I push further than I really feel is manageable, I invariably end up crashing. This seems to confirm that I am operating at a fairly maximal level.

I am aware that this post may sound whingey, something I have often been accused of! But I think it is important to talk openly about the experience of living with the symptoms of chronic illness. Maybe that is another way I can contribute and do a little bit of good in the world!

In the meantime, I must finish writing and find a way to get my head around doing an online grocery order... so thankful that I don't have to go to the shop to do it any more, hefting around a week's groceries for six was more than a little too much!

It's All Going Swimmingly

The primary treatment for HMS is physiotherapy and strengthening exercises. I was very excited to at last have a diagnosis and looking forward to starting treatment. My first physio appointment was encouraging, the physio asked for a lot of information on my joint problems, and asked detailed questions such as "Which fingers go numb when your shoulders are bad?". She told me that I would choose my three worst joints and we would begin by doing exercises focussed on supporting those areas. I selected feet, shoulders and hips. She gave me some foot exercises to help my plantar fasciitis and said at my next appointment we would look at the other joints. I went away feeling buoyant and hopeful.

At my second appointment, the physio manipulated my shoulders and hips. She said she could not detect any problems in the joints except for them being hypermobile. She said that all my pain must be muscualr and due to me being "very unfit". I was concerned by that, as by my estimation I was not "very unfit", I may not have been able to do much formal exercise in recent moths, but I lead an active life and have been exercising regularly as much as I have been able, all my adult life. A lot of my shoulder pain is due to muscle cramps and tension because of the muscles having to work harder to support the loose joints but I have a lot of problems with my hips suddenly painful clicking or clunking so that they then feel as if they are out of position, I then can't put weight on my leg until I manage to ease things back to normal, at which point the pain is pretty much gone. My knees and elbows are similar. Even my toes can do the same (a bit of a problem if I am on the moors a mile from the car!).

The physio then announced that I didn't need any specific exercises and all I should do is "exercise". I knew this wasn't the answer, as I have been trying to do that for as long as I can remember, and my pain has become worse and worse, not better. And when I do manage to improve my fitness, soon enough I get an injury and then lose the gains I had made. Embarrassingly I then started to tear up, not surprisingly considering how serious this issue is for me I suppose. Noticing that, she relented and said she would get me some sheets of shoulder and hip exercises and some therabands, and that I could come back in a few weeks to see how  was getting on.

She did give me some good information on pacing and living with chronic pain and fatigue, although most of it wasn't new to me thanks to the internet. The information about how chronic pain affects confidence was useful. She also recommended strongly that I restart swimming. This was very helpful, as due to our tight budget I had not been able to go swimming this year, but this information from the physio enabled me to raise it further up our priority list, so I have been able to go once a week since then.

I made an appointment for a few weeks later, and went home, not sure what to think. I started the exercises and swimming and waited to see how things would progress. I then got a phonecall to cancel my next appointment as the physio would be away. I decided to delay making a new one and see how I got on working with the information I had for a while longer. After some experimentation, I have settled into the following routine:

Monday- a strength training workout, including the exercises given by the physio, or related ones, plus more for other parts of the body. I am using weights instead of the bands as they feel better for my joints (the increase in resistance from the bands through the movement, as they stretch, does not feel good as it causes considerable diagonal leverage on my joints) and are simpler to use.

Wednesday- DDPYoga workout (more about that later), done carefully, with modications where needed.

Friday- Swimming, usually 45 mins to 1 hour (I think if I can swim for an hour at mostly middle lane pace, I am not "very unfit"!). I love swimming, it is so soothing and while I am in the water, the aches and soreness in my body are considerably diminished. Sometimes my hips huirt at the beginning and i can't swim breastroke legs properly, but after a few lengths there is usually a clunk and then my hips start to function normally again (does that sound muscular to you?!).

In addition, I continue to walk the school run and lead a general active life. I also bought Wii Fit which I find useful especially for doing a short bit of activity to wake me up when I am feeling sluggish but not really needing or able to rest. Wii Fit tells me I have lost 12lbs since I began my new routine, in addition to some dietary changes with the aim of helping my digestive symptoms. I haven't gone hungry at all and am eating lots of nutritious foods, so I take the weight loss as a very good sign that what I am doing suits me and is improving my general health.

I rang the physio department this week to book my next appointment, to be told my physio is agai unavailable, and can't see me until late October. Still, that gives me plenty of time to see how my current plan is working for me. I need to work slowly and gently so time is needed in order to observe what the results are.

Well, rather a lengthy, dry post today, but I thought I should start by giving some background and explaining what I am currently doing. I'll write about my diet plan and DDPYoga at a later date.

Why I am wibbly wobbly- What is hypermobility syndrome?

Hypermobility syndrome, or HMS (otherwise knows as joint hypermobility syndrome or Ehlers-Danlos hypermobility type (EDS III) is a hereditary connective tissue disorder. Due to a genetic defect, the body does not make collagen correctly. This leads to joints which can move outside of the normal range of movement, ie hypermobile joints. This does not necessarily mean being bendy like a gymnast or ballerina. Many people have generalised joint hypermobility, meaning that they have many hypermobile joints which cause no problems. Others are symptomatic and  therefore meet the criteria for a diagnosis of HMS.

People with HMS often develop painful and stiff joints. Some people are only affected in some joints, others have more widespread problems. In addition to joint pain, sufferers may experience muscle spain and cramps due to the muscles becoming overworked as they try to support the loose and weak joints. Joints are more easily injured- dislocations, subluxations (partial dislocations), tendonitis, sprains and strains may occur. Healing may be slower, so injuries are more troublesome.

There is another group of conditions which are related to joint hypermobility. Weak connective tissue throughout the body can lead to problems including IBS, gastroesophageal reflux, spinal disc problems, bladder problems, pelvic prolapse, hernias, varicose veins, striae (stretchmarks) and mitral valve prolapse. Some people also have problems with their autonomic nervous system, the part of the nervous system which regulates breating, circulation and digestion, leading to symptoms such as orthostatic intolerance (eg POTS), lightheadness, dizziness and palpitations. Dysautonomia can lead to the body over-responding to physical and emotional stresses, and over-producing adrenalin. Poor proprioception (sense of the body's location in space) can be a further issue, increasing risk of injury and even affecting the sense of self.

In addition, patients generally experience fatigue, sometimes accompanied by insomnia and/ or unrefreshing sleep. It appears that hypermobility syndrome may predispose to fibromyalgia and chronic fatigue. There is also an increased incidence of anxiety in hypermobile patients, possibly due to the body's excessive adrenalin response. Depression may also develop, especially as many people are undiagnosed for a period of years, often being told their problems are psychological, in their heads, or even that they are malingering or attention seeking. Family and friends may also be unsupportive, especially prior to diagnosis. Dr Alan Pocinki writes:

"Often, people who suffer from hypermobility syndrome are called hypochondriacs
or lazy because they avoid many everyday activities, because these
activities that cause them pain. Most of them don’t look sick and, as a result,
friends, colleagues, and even doctors can be unsympathetic. Furthermore, they
may spend years unsuccessfully searching for the cause of their chronic pain
and other symptoms because many doctors are unfamiliar with hypermobility
syndrome and its complex set of symptoms. Such long delays and lack of
understanding can lead to frustration (with doctors and with daily life), anger,
anxiety, and depression."

There is no cure for hypermobility syndrome, but there are a number of treatments and measures which can reduce pain and other symptoms, increasing quality of life and wellbeing. These include physiotherapy, and a carefully planned program of exercise and strength-building. Pain management, painkillers and education in techniques which support living with fatigue (eg pacing) can all be helpful. The symptoms of some related conditions, such as IBS, reflux, depression and autonomic dysfunction, can also be improved through medical care and the teaching of management strategies. However, this requires access to medical professionals and other experts, such as fitness instructors, who are understanding of, and educated on, the subject of hypermobility. This is proving, for many, to be very difficult to find, especially if privately funded support is out of reach. Thankfully there is a wealth of literature, online resources and support, and there are self-help measures that can be taken, though caution, and discussion with your doctor, physiotherapist or another appropriate professional (if you have one who is interested and helpful) is always a wise consideration.

For more indepth information, and an explanation of the current diagnostic criteria, please go to Joint Hypermobility Syndrome Article, Dr Alan Pocinki
Ehlers-Danlos Syndrome, Hypermobility Type

Other resources ionclude:
Hypermobility syndrome assocation
"Guide to Living with Hypermobility Syndrome", Isobel Knight