Some tips on how to LIVE with chronic illness

Don't take a backseat with your body, it's the only one you're getting. This post puts together some things that have helped me get my life back from mastocytosis (mast cell disease) and early inflammatory arthritis

Research: Find out everything you can about your condition from reputable sources. If your condition has a charity, start at their webpage. They should have links to the latest research. The Internet can be a great source of information but you need to be able to judge what is backed up by scientific research and what is bunk. There is a lot of bunk. This is why it is a good idea to start out with the charity site. After that you'll be armed with enough knowledge to spot the bunk. Bunk at its most benign is misapplied science/understanding, perhaps by fellow sufferers. At its worst its twisting the facts to sell you something.

Lifestyle: Consider what changes you can make to improve your 'background' health.

• Add more fruit and veg, preferably raw or lightly cooked. If you like juicing, juice (mostly veg, fruit sugar is buffered by fibre and is generally better whole). Consider excluding foods if you know they make you worse (talking this through with a dietician is probably a good idea as you don't want to exclude too many things!). Eat as much whole food as you can and avoid processed foods.
• Find out how many hours sleep you need and go to bed early enough to get it. 
• Exercise regularly. 
• Try yoga, meditation and/or mindfulness (lessons are useful to start with). If you take yoga classes and your teacher doesn't help you adapt poses around stiff joints switch classes. 
• Figure out what is difficult at home and fix it if you can (I struggle with picking up a full washing up bowl so bought one with a plug). 
• Get into the habit of filing all your medical paperwork so you don't need to search for it if something goes wrong. Reorder prescriptions with enough time not to panic if you can't get to the pharmacy or the pharmacy can't get your medication.
• If you are a competitive athlete keep a really detailed training diary. Learn what helps and what hinders. Track your resting pulse and general energy levels to spot if you are overtraining, back off if you are (I'm really bad at this one!)

Don't underestimate the power of positivity - and negativity

Reading fellow sufferers's blogs can be really helpful. It can make you feel less alone, give you ideas on how to cope and information about your condition. BUT if the blog is all about how awful it is to live with your condition, how many medications you'll end up taking and how it wrecks your relationships/life/career, back away slowly and never go back. If you've done your research you know what you might face. Dwelling on it won't help.

It is because many diseases are 'hidden' (they are not immediately obvious to others) that some bloggers only list the worst aspects of their disease. I don't think this is deliberate, it comes from a belief (real or imagined) that other people don't believe you are sick, that they don't understand how hard it can be to cope with your condition. If you run marathons for example people probably will find it hard to understand that you have a serious health condition that requires multiple medications, careful self-monitoring and lifestyle changes (no more booze, late nights, chocolate… whatever). They won't understand that sometimes your medication makes you so sick you can't eat and while you're smiling along to some anecdote you are also calculating how long it would take you to reach the nearest bathroom. They won't know how many hours go into juggling medical appointments and repeat prescriptions (which are so out of sync your pharmacist knows you by name because you are always in to pick up one of the bastards). But you need to decide if this matters.

When I was diagnosed with early inflammatory arthritis I was a bit shellshocked. A second chronic illness, and a potentially very debilitating one, just seemed so unfair. I'm a runner FFS! But through my friend - and inspiration - para dressage rider Bert Sheffield I joined up with a Facebook group for athletes with inflammatory arthritis. It's a group full of people whose arthritis has progressed farther than mine, but who are still standing, still racing. Almost all the posts are positive. Conversely I lasted about 5 minutes in a mastocytosis group which was overwhelmingly focused on the negative. If you find yourself surrounded by negativity, get out.

It is sometimes hard to focus on the positive when things are rough. Allow yourself to feel, even if the feelings are bad, but don't dwell. Keep a list of positives. Stick it on the wall.

If you can, add a list of good things you have got from being ill (I know!)

Stuff my Mastocytosis has given me:

• Being one of the Vodafone JustTextGiving Fittest Fundraisers
• Meeting Dan and Grant and being inspired by them
• Meeting Haile Gebrselassie 
• Being (a peripheral!) part of the Leukaemia and Lymphoma Research celebrity running team at the Great South Run (and meeting Iwan Thomas there)
• Getting to start the Great North Run at the front, and running it with Noah Huntley (he's gorgeous btw)
• Raising a tonne of money for Leukaemia and Lymphoma Research (normally it's really hard to get people to sponsor someone who runs anyway) and being listed in their 'hall of fame'.
• More empathy
• The kick to freshen up my lifestyle: more raw veg, more early nights, alcohol consumption down to around 3 units a year, taking up yoga and mindfulness
• A keener sense of who is important in my life, and, cliché that it may be, who supports you when the poo hits the fan.

And the arthritis:

• Joining some amazing athletes as part of Team Trion:Z in 2014

In short:
Focus on the positive but throw the toys out the pram when you really have to.
Do everything you reasonably can to support your body and mind.

Stay Strong :)