Life is tough enough without a chronic illness, but throw constant pain and exhaustion into the mix and make no mistake, you have a war on your hands.
You find yourself conscripted for constant combat overnight; a never ending series of minor and major battles.
You can not win them all, your mission must firstly become survival, and with time and strength, to find a new kind of living.
I have been fighting on many fronts for almost 24 years now, the entirety of my adulthood and a good part of my formative years, and I’ve learnt some tough lessons along the way. I’ve Beaten myself up, more than any other individual ever could, but have somehow carved out a positive happy life for myself, despite all odds.
Is it the life I envisioned for myself? No. Is it the life I dreamt of as a child? Partly.
I’ve given up putting things into good or bad, right or wrong and tried my damndest to just ‘be’.
This is how I’ve survived the challenges. It takes time, dedication and huge self belief, but you can take some of the power back from the uncontrollable nature of your chronic illness. If you look hard enough, the help you need is already all around you, but most importantly, it’s right there, inside you. You are strong enough. You are fierce enough. You’ve already fought so many battles, what’s one more? It’s the fight of your life, the battle for happiness and acceptance of the new you, and I’m with you every step of the way. I’ve got your back. Be brave.
We will start here, as for me it was the hardest one to overcome.
Jealousy of others functioning bodies, jealousy of the lives and jobs that others did around me, I wanted to be anyone other than me, for a very long time. I grieved the person I was before, and the life I had planned for myself. I allowed myself to enter the depths of despair, to become angry and sad, with the end goal of coming out the other side having dealt with these emotions. The loss of self is overwhelming when you are searching for the new you; give that process the time and emotion it deserves and requires to truly overcome it. Allow yourself the anger and pain; grieve, but see that it’s part of the process to heal and reconcile this new version of you with yourself.
Talk to people you trust, get councilling, write it in a diary, sit in the fresh air and think, but do allow yourself the time to experience and express these emotions, or you will forever envy those that are healthy and that are living the life you once wanted.
Find yourself new achievable goals, find the things that bring you pleasure and happiness and focus on them, whether it be a home study course, or adventures your body can handle. Plan your life to include things that do challenge you, that you can do, and that make you happy, whatever they are.
I see greed as Wanting more than you can ever have, or handle. Bringing life back to the simple pleasures is a positive thing, chronically ill or not. Do we need to work 70 hours a week to own the latest smart TVs? does that really bring us happiness? What do we sacrifice along the journey? Why do we always crave more, and not look around us being grateful for what we already have?
I’m a simple girl, but have been caught up historically, in the status symbols of success, and validation of who I am, whether that be a job title, home or car. Having a chronic illness is tough, we balance life and death so carefully, out of all the souls walking around, we should know the value of the small things… The days we can leave the house and look upon nature, the taste of a home cooked meal when we’ve not been well enough to make anything, other than the easy or instant. The laughter of a friend when we’ve spent hours or days alone.
Set yourself reasonable, achievable challenges,and the rest will follow. If we can just give value to the things we do have and put them in context of our perceived losses, greed slips away.
Whilst anger is a valid and useful emotion in life at times, allowing it to be the overriding drive when living with chronic illness, is not healthy for your body or mind. Wrath makes us tense and stressed. It makes our bodies work harder, when they are already working double time just to try and function. Allow yourself anger when it arises and recognise it’s worth, but rationalise and manage it, instead of letting it drive you forward.
I have found mindfulness, and meditation on the water have helped me endlessly with this. These are skills that can be of benefit also as a parent; it’s helped me teach my children the tools to recognise and acknowledge their anger, and deal with it in a healthy and productive way. Life is sometimes Crap, and bad things sadly do happen to good people, but life has a way of bringing you light if you are open to it.
I feel calmer than I ever have, and I think that the acceptance of this new me and letting go of who I was before, has been pivitol in that process. Sometimes when out at sea on my paddleboard I scream and shout and rage at the water. When I swim sometimes I pound the waves with my fists, asking some unknown fictional body, why me? What did I do that was so bad that I deserved this? I allow myself those moments, channel it, and truly get it out of my system. If you are able to participate in some kind of exercise then do. For me swimming and paddle boarding are my limits, but I have been overwhelmed by what they have given back to me, in terms of empowerment, ownership and peace.
Once again this comes back to self perception. I took a lot of pride in my job and the person I had worked so hard to be. I had pride in what I did, and I felt like I was worth absolutely nothing when I lost it all.
I am also too proud to ask for help and will struggle through when it would be much more efficient to just ask for, and graciously accept the help I’m offered.
This is a tricky one, as most chronically ill people strive for independence, so my way was to ask the the right people for the right help. Get yourself an occupational therapist, their job is to empower and put the control back in your hands as much as possible. The aids I have around my house enable me to be as independent as possible and the exercises to strengthen my mind have been priceless. Just those few tweaks as to how I perceive myself and what I think others see when they meet me, have helped me endlessly. Take pride in what you can do instead of dwelling on what you used to be able to do. Focus on the person you have grown to be, instead of looking back at who you once were. This will allow you to value what you have; to be comfortable with who you now are, and in turn allow you to not see it as a weakness to accept the help offered to you.
This is a tough one, as a lot of us are in a vicious circle with medication; the meds hack apart your stomach lining and make you feel sick, so you eat before and after to help. I ate myself up three stone throughout a year or two of bad spell after bad spell. I craved stodge and was fairly static.
I was depressed as I’d lost so much, and ate to feed the void that was left inside me.
I’m all for health not image, amd I was making my already unhealthy body even more unhealthy. I read up on food as medicine, and cut out things that might not be helping me and added in things that might. I keep diaries of what I ate and my symptoms and found a balance of food that enabled me to be as healthy as possible and with a much energy as possible. Turmeric, ginger, garlic, in fact many fresh herbs and spices have beneficial properties for many symptoms. I juice lots and eat as much as I want but of the right things. Again it’s a state of mind. I just gave up on myself for a while there, and saw my body as a war I could never win.
It has been a long and ongoing journey, but I am now in charge and empowered into feeling like I have some say in my body. There is no magic wand and very few people can truly ‘fix’ themselves this way, but the simple perception of who was in charge, my illness or me, changed everything. It didn’t feel like I was out of control anymore. I was working with my body to make it as healthy as it possibly could be, despite all that is still wrong with it.
I promise you, that feeling is priceless.
I am not lazy.
I take to bed and turn down social engagements because my life has to be precisely balanced, to manage my various conditions. It’s a common misconception that the chronically ill should just be able to man up and crack on.
It’s not that simple, when your body just refuses to work from out of nowhere.
Imagine walking the school run and your legs just stop working. Imagine You are at work and your mind goes blank and you are unable to utter a single word. Imagine driving along and your legs starts uncontrollably shaking and jolting. By listening to our bodies and learning our limits, and The signs that we are putting our bodies under stress, we allow ourselves to occasionally prevent those scenarios.
That said, it’s easy when you have had a bad spell, to become locked into the patterns you’ve created to cope; I combat this by taking up an offer of a short drive and walk with a friend. Social contact, fresh air, a change of scenery and if you aren’t ready, a safety net is already there with you. I sometimes just take myself off in the car and sit and watch a nice view and life passing by, with my book and a flask.
It’s my way of living and connecting myself back to the world my health forces me to remove myself from at times.
Meeting a friend for a cuppa at their house, especially if you have a young family, for me allows safe social contact, as I can leave at any point and it generally won’t put my body under too much stress.
There are ways to combat the sloth, you don’t need to force your body to things and places you can’t achieve, it will only make you feel more frustrated. Test your boundaries, push them, but always respect them. If that process enables you to stay in control, and helps you to work with you body rather than against it, then it’s got to be a win.
This to me is two things, firstly lusting after a life beyond your means, and secondly lust in the traditional sexual sense. The first part goes hand in hand with envy, by all means lust after the achievable within the limits of your varied abilities, but don’t try and set yourself against a healthy persons template, as you will be destined to frustrate yourself further.
For example, do the degree, but do it part time and with practical support. Volunteer or work, but at times in the day when you are generally at your best. For me the approach’something is better than nothing’ has served me well. I can’t run, and sometimes can’t walk, but I can limp along with my stick or use a chair. I can’t go to work and be part of education in the traditional sense I trained to be, but I can write, talk to people and hopefully help and educate via a different route.
It’s all about perspective; how you choose to validate the things you do, and can achieve.
Forget what you thought you knew about what it meant to be successful, and set yourself a new precident.
In terms of lust, as a disabled woman, it’s assumed that me a sexual woman shouldn’t exist. There is no reason to be ashamed of this new body or its limits, the right partner will learn to love you and respect you just the same. There are many aids available to make intimacy more comfortable available online, and plenty of support groups out there. Equally if sex is off the table for you mentally or physically, deep connections can be formed by simply being with a partner, talking whilst laying side by side, holding hands. No TVs, no phones. Having someone truly care for you as a woman, or man, and love your body mind and soul, can change everything, so don’t be afraid to be vulnerable.
Communicate and be brave as once again, a new adventure where you find a new version of you, that you can live with and ultimately be very happy with, is just around the corner.
You can read more about my journey here mamamifsud.com