Saturday, 7 September 2013

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

Saturday, 22 June 2013

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.


Thursday, 16 May 2013

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.

Sunday, 6 January 2013

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.