Thirty things you may not know about my invisible illness

I am taking part in the thirty things meme for invisible illness awareness week. So, here's mine:

1. The illness I live with is: hypermobility syndrome, otherwise known as joint hypermobility syndrome or Ehlers-Danlos (EDS) hypermobility type

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: Birth?!

4. The biggest adjustment I’ve had to make is: That's hard to say, because it's something I've had all my life and the symptoms have crept up on me gradually, so there was no sudden big change to deal with

5. Most people assume:That if you appear basically normal on the school run, around town etc, that really there's not much wrong with you

6. The hardest part about mornings are: Waking up feeling exhausted and knowing I have to get up and keep myself going through another day of relentless fatigue

7. My favorite medical TV show is: I used to love the old school ER

8. A gadget I couldn’t live without is: My lightbox

9. The hardest part about nights are: Not being able to sleep due to joint pain, muscle aches, stomach trouble and excessive adrenalin

10. Each day I take __ pills & vitamins: A multivitamin/ mineral especially for people with unstable blood sugar, vit D, B12 (can be poorly absorbed in people who are gluten intolerant like me), vit C (used in collagen repair), Mg (reduces muscle aches), horse chestnut tincture for varicose vein pain, probiotics

11. Regarding alternative treatments I: Wish I could afford them!

12. If I had to choose between an invisible illness or visible I would choose: That's a weird question. I'd rather be well. Otherwise- who can pick a disease?

13. Regarding working and career: I am sad that I will probably never get to have a career, and maybe not be able to work at all, and feel constantly guilty about the financial consequences for my family

14. People would be surprised to know: You tell me? LOL

15. The hardest thing to accept about my new reality has been: There are two- one is just the constant physical reality of living with aches and pains and fatigue and the other is the restrictions it places on my life in terms of what I can do for others and all the hope and dreams I have had to let go of

16. Something I never thought I could do with my illness that I did was: Hmm, nothing yet

17. The commercials about my illness: Eh? No one has even heard of it

18. Something I really miss doing since I was diagnosed is: Yoga

19. It was really hard to have to give up: My plans for studying and work

20. A new hobby I have taken up since my diagnosis is: Pilates. Not really a hobby. I don't really enjoy it but it does help

21. If I could have one day of feeling normal again I would: Go for a massive family day out with lots of walking and then out for pizza and cheesecake (gluten!)

22. My illness has taught me: That I have to find value in being rather than doing. I can't say I am any good at that yet though!

23. Want to know a secret? One thing people say that gets under my skin is: Can't really think of anything, well, I suppose it would be when people downplay it as if it is just a minor annoyance

24. But I love it when people: Listen when I talk about it and show that they accept what I say

25. My favorite motto, scripture, quote that gets me through tough times is: It is as it is

26. When someone is diagnosed I’d like to tell them: Come over to the HMSA forum.And beware NHS physios!

27. Something that has surprised me about living with an illness is: I don't think there has been anything surprising. Well, except my surprise at finding out that many doctors and specialists don't even believe in my illness and are woefully ill-informed about it. After years of battling for a diagnosis I thought I had finally made it, but I have not found any useful help via medical professionals as yet.

28. The nicest thing someone did for me when I wasn’t feeling well was: Listened to me whining and gave me gentle sympathy

 29. I’m involved with Invisible Illness Week because: There are so many people suffering with invisible illnesses and people often don't really seem to understand what it is like and how hard it can be to be chronically ill in this way

30. The fact that you read this list makes me feel: Nervous LOL

The Chronic Tonic

I'm not writing many blog posts at the moment, but I have a new Facebook page which is now up and running. It is called The Chronic Tonic and is about living well with HMS/ chronic illness. So if you'd like to follow my progress, or have HMS or another chronic condition and would like to join in the fun, please hop over there.

Today I am starting a 30 day wholefoods challenge and will be reporting on how I am getting on each day.

TheChronicTonic

This is What a Bad Day Looks Like

I haven't blogged lately, and the reason for that is that I have been feeling too exhausted to manage it, and also progressively more depressed. Well, a problem shared is a problem halved, or is that a problem for two people... I don't know, maybe we can divide the burden between us and so make it easy to carry, and if you have a burden too I will carry a little bit of yours. Teamwork!

I have pretty much lost all hope lately. I am feeling steadily worse and starting to think that a future of increasing disablement lies ahead of me. Driving is one of the biggest problems, I am finding it increasingly hard to focus and I don't know what we will do if I can't drive safely any more, and also I have to be able to manage to care for the children on my own when my husband goes on business trips, otherwise he can't keep his business going. The future feels very scary with health, finances and so on, as well as other family pressures which unavoidably fall to me.

My eldest is in year 12 at school and talking about her university choices, and I am worried about how they will all cope with us being unable to give them any financial help at all, especially as I have heard that in some places the maximum student loan isn't even enough to pay hall fees. And for myself? Old age on a state pension (if I can get anything from the government by then, considering I have paid almost no tax in my entire life) in a grotty flat barely able to move around, if I am lucky enough not to be in a wheelchair by then?

I still keep coming up with ideas and plans so I still have a little life left in me, but I have absolutely no energy left to put them into practice. The school run is getting harder and harder, cooking tea now seems really hard and I started to get tearful today just at needing to carry the pans to the table.

As well as being intolerably exhausted and the constant all over soreness, I am bored stiff and so sad about all the things I will never do, places I will never go and so on. I never forget how blessed I am to have my family but even that is bittersweet as I feel I am failing them so badly by being as I am I can't get away from feeling that it is my fault and I should just be able to force myself to go back to everything I was doing previously when I was feeling better -all the exercise, and being dairy, corn, alcohol and sugar and white carb free like I was then, as well as the gluten and caffeine free which I have sustained.

Well, what can I say? All I can do is carry on as best I can, and if I have to stop doing the useful things I do now, and end up confined to the sofa/ bed or whatever, well I will just have to find a way to live with it.

Weighty Matters

This post is partly about my plans for my health in the New Year, and partly a response to and discussion of recent articles and studies on the subject of obesity, including:

Association of All-Cause Mortality with Overweight and Obesity 

"Weight is healthy" study criticised 

Obese and unhealthy people could face benefit cuts

Benefit cuts for the obese are driven by fat panic and class hatred


 If it seems a little disjointed I apologise, I compiled it from several comments I have posted elsewhere on this topic.


This year for once I am not vowing to tackle my weight by dieting, my energy levels by trying to force myself to be more active, or my mood by trying to force myself to believe fake happier thoughts. I have decided that today (and quite possibly every year from now on) is a year for TLC.

So my resolutions are- to eat plenty of really nutritious food, to take the rest I need as best I can considering my other commitments, to take care of myself with gentle country strolls and do a little bit of physio most days instead of trying to do more and then crashing, and to work on mindfulness and acceptance of my pain and fatigue as in the book "Living Well with Pain and Illness". I'm hoping to take the associated Breathworks course sometime this year.

I think a Health at Every Size approach to my weight, eating and health is more likely to bear fruit. Research has shown that it is a myth that fat= unhealthy and thin=healthy, and encouraging people to focus on dieting and weightloss is not associated with improvements in health. Weight cycling is prioven to be harmful to health outcomes, and those who have recently lost weight actually have higher mortality rates than those who remain fat. I also think that thin people should not be led to believe that because they are thin, they don't need to concern themselves with their diet and health!

Dieting is not the answer, diets don't work, 95% of people who diet end up gaining back whatever they lose and often more. Weight Watchers is the answer? Don't make me laugh! They consider you a success if you keep 5lbs off for a couple of years!
 
How about eating a healthy meal because it makes you feel good and because you want to care for your body by feeding it well? Or finding an activity you enjoy instead of forcing yourself to do exercise you hate and then giving it up when it doesn't bring you sustained weightloss? These should not be radical suggestions!

For those reading who have succeeded at long term weightloss, kudos to you. But the fact is that for the majority, willpower is not the answer. Our bodies are designed to eat food and store fat when food is plentiful, and the calorie laden fake foods now widely, and cheaply, available only contribute to this. Food company staff discuss how to make their foods more "craveable" and deliberately design them to be rapidly digested and utlised by the body to leave you needing to eat again at the earliest opportunity. Those drives are very powerful. I don't have all the answers, but I do know that lifelong dieting is not going to work for most people. If you don't believe me, open your eyes, is it working?

And for those who think that shaming fat people in the answer, I ask you- when has shame and self-disgust ever been a good motivator for positive change and self-care? Hating your body is not a good motivator for taking loving care of it.

So yes, numerous studies have shown that weight or BMI is meaningless as an indicator of the health of an individual. Statistics cannot show that intentionally reducing BMI will make an individual healthier, even if that person is able to achieve that. If BMI is such a meaningful indicator, I'd like to know why underweight people are not endlessly lectured to gain weight and tutted at if they are seen eating salads! It'd only be right! Yet we do not see that happening. An underweight person may be asked whether they eat normally, if the reply is yes then the doctor is satisfied. Yet a fat person would not even be believed if they say they eat a generally healthy diet or that they are active.

Prejudice and fat phobia are not an appropriate motivation or basis for deciding on health advice or medical treatment. Fat people already receive less adequate treatment that thinner people, often being told that their weight is the cause of their problems, or that weightloss is the main solution for symptoms of conditions ranging from arthritis or CFS to, yes, you guessed it, hypermobility syndrome. Hence, instead of examining me thoroughly and recommending a program of specific exercices to target my weak and problematic joints, my physio has told me to "focus on cardio and weightloss".

A health at every size approach and body acceptance improves health. Weight stigma, body shaming and dieting does not. Please see Size acceptance and intuitive eating improve health for obese, female chronic dieters and Weight science: evaluating the evidence for a paradigm shift

I have to ask- why are many people so determined that the status quo- body shaming, dieting and the insistance that thin= healthy- must be maintained, even in the face of the growing body of evidence stating otherwise? I can only conclude that prejudice and fat phobia, whether conscious or not, is at work. Comments like this one, from the National Obesity Forum, quoted in the recent BBC new article I linked to above, seem to support my theory: "We shouldn't take it for granted that we can cancel the gym, that we can eat ourselves to death with black forest gateaux". Also note the dehumanising "headless fatty" picutres which accompany almost every article about obesity, only occasionally replaced by the equally offensive "personless mouth" usually pictured with some kind of unpleasant looking and oversized piece of junk food looming in the foreground.

These cultural ideas (and ideals) are so entrenched in us that even once we have informed ourselves, they are hard to escape from. How many times have I said that I can't go hungry as it affects me too badly? Many times. Yet after a few days of thinking about my plans for the new Year, I have realised how often I do go hungry, by doing sneaky things like going into town without having a snack, knowing I'll be out until lunchtime and famished to the point of feeling dizzy and nauseous when I get home- and naughtiest of all, it's partly in hope of losing weight... LOL walk the talk woman, do you really want to succumb to a culture that keeps women hungry and ineffective? No! 

Every individual has the responsibility to ensure that they are well informed before holding forth with an opinion, and certainly before taking a role in health decisions or policy-making. The media, the NHS, medical professionals, fitness professionals and so on should not be commenting on, advising or treating people based on outdated, disproven ideas. And as individuals we have responsibility too, toward ourselves and to the wider community. I for one will not be basing my health decisions this year on unscientific and prejudiced information.


 

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.