Geeks Vs Loneliness: lessons learned

In which Jane thinks about what being sick has taught her over the past two years...

There came a moment of absolute surrealism last month, where I found myself strapped to a table, arm clamped in a Robocop style mitt. Tilted on end, body racked with spasms and trying desperately not to puke, I began to laugh. Thus I concluded 20 months as a medical anomaly, stepping off the table of no identified illness and over the threshold into diagnosis territory.

Sometimes you just know something is wrong. There’s a flutter in your chest, a groan in your lungs. A sudden weakness in your knees, or swelling of the joints. Or simply, you don’t recover from what seems like a commonplace virus.

My condition – Postural Orthostatic Tachycardia Syndrome (POTS) – isn’t well-known or easy to diagnose. Put simply, I have issues with my autonomic nervous system (ANS), which is overheated and setting my cardiovascular and digestive systems on fire.

Here’s a few things the past 20 months have taught me.

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Diagnosis isn’t always straightforward

Doctors are usually great. They have a finite time to assess a person presenting with often random symptoms and do their best to fit you in within the diagnostic spectrum.

Sometimes this takes time. Sometimes you get challenged or dismissed, and you have to stand your ground. This can be hard when you are ill. I got sick 20 months before diagnosis. I had to keep going back and asking for help, even when my initial referrals didn’t find a cause. Persistence was key.

A smart nurse picked up something was wrong at a routine health check. Don’t ignore your health check reminders – this one put me on the path to the right doctor.

Keep asking for help. Try the solutions your health care provider suggests. If these don’t work then note your symptoms down. You know your body better than anyone. The tiniest detail can be crucial in making that diagnosis.

Make a plan

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Diagnosis is just a starting point. What happens next is mixed between what we can do for ourselves, and any medical intervention needed. My cardiologist directed me to two excellent charities with informative websites.

These gave me a rough idea of what lifestyle changes I can make to help me feel better. Not recover – I have this for life – but to manage my wonky leg and volcanic gut. Be wary of outlandish suggestions online and look for the nuggets of sense from professionals and fellow sufferers. I came up with a basic exercise and diet plan tailored to my condition.

I visited my GP with this, and he approved each step. This gives me a good framework to go forward with. More importantly, it gives me some control back over what has been a debilitating slog of an illness.

Being ill is expensive

My capacity for work is limited, as there are many days when I just don’t function. Compression tights, medi-alert bracelet, prescriptions, and several physio sessions later, and my bank balance is crying. I don’t resent this money (it’s an investment in myself), but it is hard to find. Other people need far more investment to support them properly.

If money is becoming a critical issue for you please ask for help. Approach a charity such as the Citizen’s Advice Bureau, or one that deals specifically with your condition and ask for support. Consider contacting your local Social Services department for help if you need physical adaptations or aids. Negotiating the benefits maze is horrendous. Don’t do it alone.

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Look for the positive

Being ill isn’t fun. it takes a toll on you not just physically, but also mentally, regardless of what is wrong with you. Illness and uncertainty can become a negative mantra in your head. Switching this off isn’t easy. I’ve chosen to draw a line between ‘before diagnosis’ and ‘after diagnosis’. I have this condition; now how can I make life better?

Small things bring big pleasures. A piece of lemon cake, fat salty chips and a seafront walk with the family – all good for the soul. Find your own small sweet spots. Enjoy them.

To Summarise

Ask questions, no matter how small or silly they may seem. Challenge opinions and decisions that may go against you in a respectful and informed manner. Accept that there might be limitations on what the medical professions can do – but that in the main they are doing their very best to support you.

Ask advice from people in a similar position as yourself – but be selective of which you choose to take. Have a plan that gives you achievable goals to work towards to make life just that little bit brighter.

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Small steps all contribute to a marathon. There will be bad days, but there will be brilliant days full of sunlight.

This is just my own experience as a human, and does not come from a medical viewpoint. Always ask your doctor for help first if you have a medical concern.

Thanks, as always, for reading.