Living with a chronic disease: some tips from the ‘littlest room in the house’!

 In Clothing, Coping with Chronic illness, Patient Testimonies

I have been asked to write a piece about chronic illness and to share any tips I might have for surviving the every day realities of a ‘forever illness’.

At first I thought: “Huh?! What qualifies me to write such a thing?”.

But as my ulcerative colitis of the past 10 years sent me rushing to the ‘littlest room in the house’ again, and again, and again, I had time to ponder and realised that, while certainly not unusual or special — estimates that there are up to 1.3 million people suffering from an inflammatory bowel disease of some kind, of which ulcerative colitis and Crohn’s are the most prevalent — perhaps my experiences can at least help fellow sufferers feel less alone?

And so … I would like to pass on three tips:

— distract yourself;

— ask for help; and

— stop feeling guilty!

My first tip is in fact directly inspired by my oh-so-many-trips to the loo.

I guess I could/should write ‘practice self care’ which would be very good advice but since I struggle to apply this myself, I am going to narrow my suggestion to something much more basic: distract yourself.  

When my body surprises me and causes me pain, I have found that distraction genuinely helps where medication can not.  Books, magazine, music, whatever works for you, make sure you have it to hand to help you get through the more unpleasant bits of your day.  (There’s a guide to some great books recommended for patients here!)  

 My second tip is: ask for help!

 This is something I am really bad at but after many lectures from loved ones – family, friends, and colleagues – I am trying to get better at.

I am shattered. Most of the time. 

But what’s so unusual about that, right? Most of us in our 30s and 40s are! This is probably the busiest we have ever been and are ever going to be! I am married, have three daughters, three pets and run patient clothing social enterprise INGA Wellbeing (creating attractive and comfortable clothes for people to wear during medical treatment.)

But, what I struggle with most and what sometimes causes me to wipe out entirely and end up spending time attached to drips in a hospital bed, is my chronic illness. It saps my energy and adds complications to my day and, for the most part, is entirely invisible to the casual observer.  

The tiredness linked to my condition is mental, emotional and physical .  The physical part is, I think, immediately understandable.  Lack of sleep from broken nights because of visits to the loo; weight loss from …errr … too many visits to the loo; lack of nutrient absorption owing to … those all-too-frequent loo visits; and being constantly on the run (no pun intended) and late for everything due to unexpected but urgent visits to the loo.  Exhausting!   Mental exhaustion because I have to remember my medications as well as everything else on my to-do list and factor in proximity of a clean loo to chosen activity/outing, appropriate clothing choices etc.  And emotional  exhaustion because I miss out on important events; cancel things at the last minute and just get worn down by the pain and fatigue. 

My tip therefore for countering exhaustion is: ask for help!

I know, I know! You want to feel normal! To not be different. Be a help and support for your harassed partner. Be a reliable and active parent/friend/colleague.  But … the truth of it is: you ARE sick and they want to help, so you have to show them how.  Surely there must be some things you could do less of, or ask someone to do instead of you? Dog walks? An occasional mealThe school run? If you don’t ask, they won’t know!

To help you with this, my colleagues and I at INGA Wellbeing have found many great resources – apps to create meal trains, organise errands etc – and have compiled them into a Carer’s Guide. Now all you have to do is try to let some things go!

And that goes for the guilt too!

Since ulcerative colitis is an inflammation of the intestine it can ebb and flow (excuse the poor choice of words!) meaning that there are periods in which it flares and times at which I live a reasonably normal life. The rhythm and length of these flares is unpredictable and while I have noticed a very clear correlation with stress and anxiety for me, not everyone knows what their triggers are and very few of us know how to end them without, that is, bringing in the big guns of mega medication – steroids; immune suppressants or even surgery.

For those whom we live with – our partners and children – it can be very confusing. Is she sick, or is she not? Sometimes it is clear – from the weight loss, panicked dashings in the direction of the toilet, lacklustre energy levels, face contorted in pain and, at its worst, hospitalisation – that I am very unwell and yet, at other times, one might be forgiven for forgetting that I have – and always will have – a very real disease.  I sometimes feel, therefore, that others struggle to be empathetic or at least to stay empathetic.  If sometimes I am well and able to have fun and go out on family trips or date nights, why then can I not just pull myself together on the other days/weeks/months?  I sometimes get a feeling from others – and, if I am honest, I have been known to follow the same train of thought myself  – that I ought to be able to nip these flares in the bud. Not ‘let myself’ go. That I bring the flares on myself.

Living with the guilt that you might be the cause of your own – and others’ – discomfort  is an unexpected, but frequently reported, side-effect of chronic ill health.  For this, I am afraid however, I have no miracle remedy to suggest except to educate your family, friends and colleagues about how your chronic diseases ‘works’ and to cut yourself some slack! And to let them in – let them help.  Let them be a part of the solution and they will engage with the problem in a more positive way.

It is what it is. You are not inventing it, attention seeking, or the cause of it! You are living as best you can and that is all you can ever do.  Period.  If you know of any other resources, ideas or products that have helped alleviate the struggles of living with yours or a loved one’s chronic illness we would love to hear from you.  Drop us an email here or share a comment below. We can then share it with many others in the same situation.  Thank you.

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