Today, I’m opening up a bit more about me and sharing about my illness. Below you’ll also find tips for coping with a chronic illness, or supporting someone with a chronic illness. When I was diagnosed I didn’t want to become one of the many that are housebound (or worse), and wanted to see what I can achieve if I didn’t give up. It was not, and still isn’t, easy.

If I can live with an illness, maintain a job in the city, and train for the New York marathon (albeit slowly), then anyone can realign their life. A change in life’s circumstance doesn’t mean it’s the end – everyone deserves to become everything they’ve ever dreamed of.

It’s not just one life that changes.

There’s a myriad of issues for everyone to deal with on diagnosis of a chronic illness. It’s not just the symptoms, the pain, the shortness of breath even though you’re only sitting on a sofa, the needing help from others, or the incessant hospital appointments, but the thoughts and emotions around acceptance and adjusting to life being different now.

Having always been a determined sort of person I was not about to let some damned illness rule my life. Being blessed with access to private healthcare I spent a year under the care of an excellent medical team, weekly back and forth to hospital as an outpatient, and I am lucky enough to be able to lead a fairly “normal” life.

My illness

Myalgic Encephalomyelitis (M.E.) is a chronic degenerative neuroimmune disease. On quality of life surveys the typical patient scores more poorly than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. All types of people at all ages are affected with serious immune and cardiovascular abnormalities, with resulting serious central nervous system consequences.

M.E. commonplace symptoms:

• severe and debilitating fatigue that sleep does not resolve
• painful muscles and joints
• disordered sleep
• digestive disturbance
• orthostatic intolerance
• headaches of a new type, pattern, or severity
• cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
• sensitivity to light, sound or vibration, taste, odour or touch
• muscle fatigability, weakness and fasciculation (twitches); poor coordination/ataxia
• autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance
• weakened immune system

I have all of that, along with breathing difficulties and tachycardia.

Ten of us sat in the clinic the afternoon I was given my diagnosis, so statistically 3 of us have taken our own lives, 4 of us are completely house-bound with full-time carers, 2 of us struggle to do most daily tasks, and I’m in the last category – the one of us that’s living a “normal” life.

Honestly, I believe that being an introvert has been a saving grace – needing plenty of my own space has given me the opportunity to manage my illness.

There is currently no accepted cure and no universally effective treatment. Those treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others. So for me, treatment means a healthy diet, maintaining running when possible, immune-boosting and different vitamins and minerals tablets a day.

But this is what it’s like for me. This is just a small snap-shot of my life, and I don’t pretend that this is what it’s like for others; some have said that I make living with M.E. look easy, but they don’t see the bad days.

Let it be easy

My hardest adjustment was with running. I’m not as fast as I used to be and it was a big shock how slow I had become. Plus how difficult it was, and sometimes still is, to lift one foot in front of the other without my toes catching the floor and my landing flat on my face! I had to forget my old personal bests, and accept the new ones. With a couple of big relapses that caused major setbacks, I’ve done Couch to 5k more times than I can count, just so I can keep running through illness. I learned the hard way to just let it be easy. That my mind was making it a lot worse for me than it needed to be.

Then there’s the fear… That my heart rate will go past 210 (206 is quite common for me), or that one of my lungs will spasm and I’ll stop breathing for a moment. The fear that my legs will give out whilst running and no one will be around to help me. What if I push myself with running – will I be pushing myself back towards a relapse? The list goes on…

Tips if you’re the one with the chronic illness

• Get out of your own head. Don’t shove the feelings aside, but accept them and find something that distracts your mind. I love to read, walk, heck I’ll even take a nap.
• Don’t believe everything you think. We lie to ourselves more than anyone else.
• Take care of yourself. You really do need to put yourself first for a while. Find little things that you love to do.
• Say no, and mean it. Don’t pack out your social calendar. Keep time in your diary for yourself, your family. Yes, there’ll be times when we have to cancel plans at the last minute, but by honouring yourself and saying no in advance to stuff you really don’t want to do, or likely to be able to do, you’ll have more peace of mind and friendships will more likely stay intact.
• Value those who stick by your side. True, the quantity of friends may drop, but the quality will greatly increase. But… pay attention to the next tip, or they won’t stick around.
• Accept that you will be angry, sad, etc, you’re allowed to be angry, sad, etc. so find constructive outlets. You are NOT allowed to be out of control with your anger and detrimentally affect the mental, physical and spiritual health of others.
• Ditch the negative vibes on social media. If people make you feel bad about yourself – unfollow!
• Develop a routine. I have things that I do each morning and evening, just for little wins. I still have them now. More on this to come.
• Keep trying to do stuff. Movement is important for all-round health, especially for a sore back. HOWEVER…
• If you need painkillers, then no, you can’t do anything more than gently pottering around. I remember having a call once with a lady three weeks post-op hysterectomy. She had woken up in a lot of pain, more than the previous mornings. Turns out, she’d vacuumed the day before as she’d felt ok. Yep, she was on painkillers, and as they had done their job she had no true sense as to what her pain and discomfort actually was. It set her recovery back three weeks.
• Get plenty of sleep. If you’re struggling, I have some tips here for you.
• Be understanding that loved ones will try to protect you, or think they know best. They probably don’t, but be nice about it. Love them for the fact they worry about you.

Tips if you’re supporting someone with a chronic illness

• They might not always know what help they need. This might annoy them. I found it incredibly difficult to explain what I needed. A hug was a good place to start.
• Maintain your boundaries. You do not have to accept bad behaviour from them. You are not a punching bag.
• Be understanding when they say no to social events, or because they need to take space for themselves, or to rest.
• Try to avoid wrapping them in bubble-wrap, or walking on eggshells around them. Treat them as you would before the illness. I know it’s not easy. I know you’re worried.
• Ask questions, but only if you genuinely want to know. We all handle illness differently. I’m one of those annoying ones who can be very dismissive of my illness, partly because I am not my illness. My illness doesn’t define me. I often forget that people don’t always understand my illness and I’ll happily explain if someone asks.
• Encourage them. If they want to try something, don’t tell them they shouldn’t (unless it’s life-endangering, see also the point above re painkillers). Do you know how many people have told me I shouldn’t run? Me neither, I’ve lost count. Suffice to say, most of them are no longer in my life, but I have completed the New York and Berlin marathons. Don’t limit them with your own beliefs.

Mental health knows no boundaries, and we shouldn’t either.

Want an action plan? Download my work/life alignment starter worksheet to see where you are giving your energy, and find one thing to take a step forward to your own unique work life alignment for mental, physical, and spiritual wellbeing.