Chronic Life: A Moment of Gratitude 

Gratitude is, in my opinion, something that can only be genuinely felt when it comes from within. No amount of ‘it could be worse’ or ‘you should be grateful that..’ comments from other people will make me feel it. In fact, such comments from people who do not live with chronic daily pain are more likely to generate rage rather than gratitude on my part. 

This Christmas hasn’t been easy. I’m scheduled to have brain surgery on 25th January and a blood pressure problem has arisen, so we’ve working with my GP to try and address it in time for the surgery. I made it through Christmas Day itself with the use of meds and a nap mid way. The two days since however have seen me stuck in bed with agonising and very determined head pain. But there is so much that I’m grateful for, so I’d like to take a moment to articulate the things I have going for me.



My husband and daughter: My husband looks after me and my daughter without ever making me feel like a burden. I remember what it was like to live with someone who made me feel guilty about things I couldn’t control, so I know just how much of a difference it makes that my husband is truly strong; he is always on my side and there to keep me from despairing and giving up. Our daughter makes me happy just by being her funny, cheeky, lovely self. Seeing her as happy and confident as other children her age, despite my situation, lets me know that we’re doing something right. 

My family: my parents are always there to provide advice and practical support when we need it. They play a big role in my daughter’s life and it is very reassuring for me to know that she has another source of love and attention outside of our home. Other members of the family help me just by understanding my situation – they don’t get upset or angry with me for missing special occasions and are delighted on the rare occasions that I make an appearance. 

My friends: my best friend has remained in my corner all these years, even though I’m not much use on the socialising front (or the ‘being remotely normal’ front). She is always there if I need her and is firmly on my side, even when I’m irrational or struggling emotionally. She belongs in the family section really; if past lives are really a thing, we’ve definitely been through at least one life together before.

I’m grateful for the handful of friends who are always pleased to hear from me despite the fact that it can be AGES between calls or texts. That they haven’t given up on me is an amazing thing.

The Essentials: our two bedroom council flat in East London is a blessing in my eyes (though doubtless some people would look down on it). Finding somewhere affordable to live in London is  a nightmare so I’m truly grateful for our secure tenancy. We are a few minutes walk from my parents’ place, my daughter’s school, the park, my GP surgery and my favourite nail place💅🏻😊. When I applied for this flat I didn’t know that a few years later I’d become so ill and largely housebound but if I had known, this is exactly the location I’d have picked. The fact that we have some lovely neighbours is a bonus too. When I’m getting stressed because I’m too poorly to tidy up/clean as often as I’d like or decorate as I desperately want to, I remind myself that we have everything we need here. 

The NHS: the NHS isn’t perfect; you need to advocate for yourself and stay on top of the admin side of things, as it can be slow. However, I’m grateful that I have access to some of the country’s best neurosurgeons, not to mention my GP who I see regularly and the prescribed meds that I am not charged for. I dread to think what all my treatments over the years would cost if I had to pay for it from my own pocket. I’m also grateful that I don’t have to do battle with an insurance company to get access to treatments; I know this can be very stressful for spoonies in the US.

Benefits system: this one isn’t always easy to feel grateful for, as our current government seems determined to paint the sick and disabled as work shy freeloaders. The systems in place for processing claims from sick/disabled people are in desperate need of reform. I paid tax throughout the decade I was in teaching; I wish people could understand that becoming too sick to work can happen to anyone, including people who worked hard and loved their careers. I’m grateful for the help we receive to keep a roof over our heads and food on the table, but I wish that sick and disabled people didn’t have to fight so hard to get what they are entitled to. The system at present is designed to hinder access to entitlements rather than facilitate it. The stigma around being sick or disabled is absolutely stifling. Still, I’m grateful that we’re not in a Victorian work house kind of situation; but we do have a Tory government, so I probably shouldn’t speak too soon…

Looking back:  I remember what it was like to live with someone who made me feel guilty for being sick. I remember what it was like to struggle through work and feel constantly stressed when my boss hounded me about my sickness levels. I remember what it was like to struggle with rent that was ludicrously high and panicking that I’d lose my job and not be able to pay it at all. I remember when being stuck at home in terrible pain meant being alone for huge swathes of time. I remember the desperate struggle to appear ‘normal’ so that I could cling onto the career I’d worked so hard for.

It is because I can remember the times when I felt desperate and alone that I truly value the blessings in my life now. I did lose my career in the end but because of the other good things in my life, I was eventually able to cope with it. The pain can and does crush me underfoot but I know how much harder my life would be if I didn’t have the above mentioned blessings to cushion and support me.

What are you grateful for?

Wishing you good luck and happy days,

Kindra x

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Chronic Life: Online Support Groups

If you’re living with an invisible illness or disability, particularly one that limits your ability to get out of the house, then the chances are that you’ve found one or more online support groups to join. I myself am a member of a few and have set up my own small, closed group for people that live with Chronic Migraine, although all spoonies are welcome.

Finding and connecting with people who have first hand experience of your condition online can be very beneficial (check out my Online Friendships post). It helps to lessen the terrible isolation that can be the result of chronic illness shrinking your physical world. But today I’d like to share my experiences & thoughts of online support groups, the kind that are set up by spoonies for spoonies and are often medical condition specific. In no particular order, here are some things I’ve noticed:

Culture matters – when I was a teacher, I spent a period of time between permanent roles doing supply teaching. I found it to be an excellent way of getting to know local schools before committing to one, as I did after a few months (I walked into one school for 3 days supply and stayed 6 years😊). My first concern when sizing up a school was the culture at work there; how do the staff speak to pupils around the building? How do the children respond to a new face at school? What was the atmosphere like in the playground and dining room? The answers to these questions told me how I would fit in to this school and I’ve found the same to be true of support groups. How do people ‘speak’ to each other? If new people post, does anyone respond? Which leads me on to…

Competitive spoonies – if you’ve been a member of a number of support groups, chances are you’ve come across at least one person like this. They are the ones who jump in at any and every opportunity to point out the ways in which they have it tougher than you. Sometimes they actively ignore the point of a post or request for advice to carve out such an opportunity. It can be VERY irritating. Even when we all have the same diagnosis, an illness can impact on people differently and to varying extents. Just because I am no longer able to work and am largely housebound, I don’t feel the need to belittle the hardships faced by someone who is still able to work. Competing with each other to earn the dubious titles of Most Disabled or Most Miserable is a total waste of our already limited energy and when I see it in support groups, it completely switches off my interest in being a member.

How are treatment options discussed? It can be really useful to hear first hand accounts of specific treatments, especially if we’re worried because they are invasive or in some way out of our comfort zone. We want to know about side effects and the practicalities and logistics involved as well as the impact the treatment had. But you know what we never need to hear? “That surgeon you’re seeing is a total butcher, don’t see him!” or “I had that treatment and it was the worst decision I’ve ever made in my life!! Didn’t help at all and everything is a million times worse now!” (These are real examples I’ve seen in support groups in response to a member asking if anyone else had had a specific surgery at a certain hospital). 
I’ve had treatments/investigative procedures done that didn’t work or that went wrong, but there’s a way to communicate useful information without freaking out other spoonies, who are more likely than the general population to be struggling with depression and/or anxiety as it is. For example, there was one stage of my ICP/Pressure Bolt Monitoring when things went badly, causing me to scream with pain. Rather than terrifying someone who is looking for info and advice on the procedure (which is the most reliable way of getting important info on how the pressure inside head is behaving), I prefer to advise them to ask for sedatives and pain meds to be on hand before this stage of the process is attempted. Surely that’s more useful than “Oh my God, getting the monitor out of my skull was a nightmare!! I screamed the place down! Don’t let them do the monitoring on you!” 

We’re all different – it’s not unusual for spoonies to have more than one diagnosis and we have all arrived at our current situation via our own unique journey. I think a good support group should be a space where we can share our experiences without judging each other. We (and indeed our individual specialists) may have different views on treatments, diagnostic criteria and pain management.  Judging each other and bossing each other about isn’t really helpful to anyone. 

Overall I think online support groups are a good thing and can be great sources of information and comfort. The key though is finding one that suits you and makes you feel better for having taken part, not worse. Remember that a lot of support groups tend to be frequented by those spoonies who are struggling the most; spoonies who are doing well as a result of treatments tend not to post so often, so don’t be overwhelmed and lose hope. Check out groups of different sizes and consider starting your own support group if you want to. I set up my own small closed group (Chronic Pain Cockney – Living with Daily Migraine) some time ago and while I’m not able to post as often as I’d like, it’s a supportive space for sharing articles and ideas on Chronic Life.

If you are not enjoying a particular group, leave it and don’t give it another thought. I have found that support groups set up by reputable charities are a good place to start if you’re  looking for your first support group to join. 

What do you think about online support groups? Do you find them helpful?

Wishing you good luck and happy days ,

Kindra x

Follow me on Instagram.

Tweet me – @chroniccockney


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