Category Archives: MCAS

Progrestination sometimes works

The thing with unintelligible incurable chronic health conditions is that you end up Googling stuff that might help. You Google all night. Lot’s of nights.

It’s like procrastination but with the potential to be useful.

There’s lot of snake-oil and negativity of course – or worse, fake-positivity. Or even worse – health politics. The world wide web eventually gave me three choices: waste my time, give up or get rigerous. I went for the last option!

And… I think… I’m finally… making progress. My procrastination has turned into progrestination!

As always I don’t want to go into too much detail about my symptoms or the things that have been helpful for me. It’s private and personal, and also, because each persons chronic health symptoms are unique, probably not that useful.

However, I think the procedural things I’ve learnt about managing the journey itself could be really useful! So here’s some of that:

How progrestinate safely

I’m now quite rigorous about what / who gets my time and money.

Here are some ways of dealing with ideas and claims found online and/or medical people.

Check they make sense in general

There should be at least a theory as to why any given treatment will work. The theory might be to do with our mind or spirituality, biology or gut bacteria… something. Some logic to begin with.

Don’t suffer expensive fools. Ever.

Never trust an idea you have to pay for: products cost money to make, sure. But people selling ideas… be suspicious. Don’t go there. Open Access is finally throwing wide the doors of Science and medicine: there’s no need to lock it down again. Also, one way of ensuring that your ideas never get scrutinised is to hide them behind a pay-wall!

Avoid big egos too, people who tell you THEY have solved the puzzle.

The only person who can cure you is YOU, in the end. Doctors and such may play a role, but they will be doctors YOU have sought out, providing treatments based on information YOU gave them. And all implemented only with your consent and commitment!

Be your own hero.

Check the science (and don’t soak your nuts)

Once I find a theory/idea, it gets checked against science papers (I use this site https://www.ncbi.nlm.nih.gov/labs/pubmed to check every claim). Sometimes there isn’t enough information, occasionally there’s no research at all. But sometimes things are out and out disproved.

Science isn’t the be all and end all of course: belief is prowerfull. Prayer too. Placebo is great … and sometimes science just gets it wrong …

But when you find out that “soaking your Brazil nuts” is a complete waste of time, that the thing which you’re soaking them to avoid is actually good for you and that the process of soaking actually increases the levels of the thing you were supposed to be avoiding till it’s not as good for you and will just make you fart more….well just think about the numbers of hours of soaking and re-drying Brazil nuts you have avoided…

Science is basically invention and scrutiny. It’s your friend here.

Is the treatment relevant to YOU?

Additionally, the idea has to be relevant. I know that sounds obvious, but it isn’t always easy to tell. Sometimes I have to do some additional research into what my body is up too. It helps rule solutions in or out – it has to be solving an actual problem you have to be a solution for YOU!

I work with the doctor on this too – he will usually check any I thing I ask about with a blood test. I ask a lot of questions about the results, and research around the answers I get. For example for the last couple of years my iron count has been “Normal” but push further and I find it’s at the very lowest end of normal. Having done some research I found there is evidence that when people who menstruate have fatigue symptoms, the thresholds for normal iron count should be reconsidered. So now I am in a cycle of supplementing and re-testing.

Don’t suffer doctors either

The same stuff applies to doctors also. You don’t have to deal with any given doctor if you don’t want too. If they are rude or don’t listen, if they’re unhelpful, arrogant or lie to you – just don’t see them again.

But if they listen, offer help, can justify their treatament ideas or do something that really works for you – then they deserve your attention.

It’s not about only “being told what you want to hear” – it’s about choosing not to engage with people who don’t help you or actively harm you. As far as I am concerned, harm includes going in to an appointment a motivated and optimistic person and coming out feeling ignored and invalidated. Now, every time that happens I think: which doctor/nurse/etc have I seen who was actually helpful? And I book an appointment with them instead. By doing this I have made a lot of progress.

Some doctors are in the middle of the spectrum of course, much what they say is useful but then they make offhand comments, usually about things outside of their area of expertise (Veganism/diet etc) – well I just consider that a personality defect nowadays!

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Keep pushing till something gives

Some things take a lot of time to get sorted, I spent 2 full years trying to get a pair of insoles that worked, seeing five different health practitioners. In the end I found a fantastic person in the NHS. She listened carefully and explained how she would solve my problem. From that one person I’ve had insoles that have eliminated foot pain and also compression socks that reduce my heart rate and a knee brace to heal my dislocation injury – all these things have helped make me better.

Don’t keep doing things that don’t work

A lot of the things which have helped most, helped pretty quickly. They also haven’t made me worse at any point.

Especially if you’re spending your own money, don’t keep doing things for months and months that don’t help quickly.

Focus on the things which did make a difference quickly.

Find out WHY those things work

Trying to understand why those specific things worked can be really helpful: for example, early on in my illness I had a liquid magnesium supplement that immediately alleviated a certain set of symptoms. So from there I worked out: why was I deficient in magnesium? There was plenty of magnesium in my diet but I’d had consistent problems with digestion, so I came to the conclusion that I was not absorbing nutrients properly from food. This has eventually lead to a breakthrough in my health from using supplements that I spray in my mouth or apply to my skin, rather than taking a pill or relying on food. There is reasonable evidence that these are absorbed the same or better than normal supplements and hey bypass my gut completely. So, theory, check, problem, check, science check. And I did start to feel better quite quickly, plus they aren’t too expensive. So… Check!

Keep doing the things that work

When you have a ton of different symptoms, things which work can feel like old news pretty quickly. It’s important to try and make a commitment to them though.

A good example is hydrotherapy, I knew from the first time I tried it that it was helpful for me – so it’s something I’ve pursued rigorously for a long time. It has been expensive, probably the most expensive thing I’ve done given how long I’ve done it for. Sometimes it’s boring… But it continues to allow me to make progress.

It’s also meant that when I found other treatments later on, my body is better prepared for them. For example I’ve been using a rowing machine for the past few months and it’s been really helping with my heart rate problems. I’m not sure that it would have been possible for me to actually engage with that treatment had I not been doing hydrotherapy for over a year before hand.

Listening to your body is not the same as doing what your body tells you

A (nearly) final bit of advice, regards to the constant mantra “listen to your body” and “maybe this is natures way of telling you to slow down”. You should listen to your body, it’s important – but also be aware that your body doesn’t always know what it needs (without help from your concious mind). It might know what it wants but that’s not the same thing.

For example, if you have postural tachycardia your body will ask you to lie down. All day long. I don’t mean that cynically, I mean it seriously. At any given time in the day I can listen to my body and it will say “LIE DOWN PLEASE”. Fundamentally though, lying down eases symptoms initially but it also exacerbates them in the long term. The more time I spent lying down, the worse my symptoms became. There’s good science as to why that happens.

Learning to listen to my body but not obey it has been a big change for me. I don’t know if I just took the doctor’s too literally or if that advice which I’ve been given over and over again since I very first became symptomatic is just really bad advice. But either way. Your body is not the boss of you.

I think the process of researching what is actually happening in my body during a symptom has been very helpful in learning to understand the difference between what my body wants and what my body needs. When I first understood that my heart rate was climbing by 40 + beats per minute every time I stood up, was the first time I really understood why I felt such a desperate need to not stand up ever! It’s that knowledge which has allowed me to pursue a treatment for the symptom that has caused so much disruption in my life.

Don’t be angry and don’t give up hope

Finally, don’t be angry or get involved in the angry game of being sick. There are a lot of people out there with chronic health conditions who are bitterly angry about the way they’ve been treated, maybe rightly so. Maybe they were predisposed. Maybe both.

I can understand the need to campaign: I’m literally campaign girl, usually have several placards ready and waiting in my back pocket… But there really is a time and a place.

When you engage with a situation online, whether it be reading and old forum post or actively discussing something on Twitter – take a few moments and think, do I feel good right now? Do I feel better? Empowered? Have I learned something that will contribute to my health or recovery? The answer to any of those questions is NO then just leave.

Save the rage up for when you’re better. Save it up till when you can become an MP or a scientist or a homeopath or yoga teacher or something. Change the world. Whatever.

I really believe that anger is a sickness in itself, it’s bad for your body, it’s bad for your mind and it’s bad for your soul. There are so many things out there that might help you and make you feel better – surly it’s preferable to spend your time and energy on those, on healing and recovery, above all else?

Also try and have at least one hobby that isn’t about your health 😉

Thanks for reading!