Chronic Illness and mental health
I am very rarely lost for words, this blog is a stream of my internal thoughts and so I usually find it easy to empty my brain onto the page, but today I am struggling. I am struggling because I find it really difficult to write about my own mental health. I can share a million photos of me in my undies with my ostomy bag on show, yet when it comes to the health of inside my brain, it is tough.
I wrote recently about making the leap and asking for help and the response I got from you guys was overwhelming, so much love and support and people sharing their own mental health experiences, it made me realise that it is important to share these things along with the physical side of chronic illness.
The truth is that I am really struggling. After 12 years of living with IBD and 4 surgeries in the past 2 1/2 years, my life has changed dramatically. The past 3 years, things have moved quickly, surgery after surgery, change after change. Each surgery, I thought would be my last but then problems arise and I find myself back under the knife. I feel I haven’t had time to deal with these things, but just had to react to each event. I think I went into survival mode.
Now, after my last surgery in January, I have 2 big hernias and know that the only treatment to get rid of them is more surgery and it has frazzled my brain. It is the straw that broke the bad ass’s back and has crumpled me to the ground.
I went to see my GP last week to talk about it, I wound myself up all morning and was a shaking mess by the time I got there, I couldn’t breathe and felt like I would puke. The idea of telling a stranger just how messed up the inside of my head feels right now was almost too much to bear but I did. And she was wonderful.
She listened, questioned and encouraged. We talked about just how huge the changes in my life had been and that it was understandable that I was having a bit of trouble in my head catching up with my body, we talked about PTSD (Post Traumatic Stress Disorder) and how the brain reacts to traumatic events. How people with chronic illness often have issues with mental health and how society doesn’t always think about healing the mind as well as the body.
We talked about my feelings of having another surgery and she suggested that we try and make me feel better in my self before making a decision on hernia surgery. Her thinking being that if I can feel better in my head, that I am better placed to decide whether to have surgery immediately or to put it off for a while.
I am on the list to see a psychotherapist, but there is a 10-12 week wait and so we decided to try some medication to help calm my anxieties and lift my mood. I hate having to take any medication to make me ‘normal’, 12 years of taking meds every day to stop you shitting yourself does that to a person. But I had to think seriously about what is best for me right now. And this is it.
I don’t feel depressed. I don’t think I do. When I speak to friends with depression, they talk of a lack of hope, of darkness and feeling stuck in a hole. I don’t feel that. I feel massively anxious. I feel panicky and distressed. I can’t sleep for the millions of thoughts of all the bad things that could happen to me or the people I love. I check plug sockets a lot. I feel I can’t breathe, that something is trapped in my chest. My heart pounds. My throat closes.
Not all the time, there are times when I feel ok, there are times when I am fine. When I feel that things will get better, that it will all figure itself out.
Then BANG! It hits and I can’t breathe. I walk down the stairs and see myself falling and breaking bones, I get on the train and imagine the carnage of a derailment, I go to events and think about how I would get my family out if there were an attack. I look at my hernias and think that I have had my fill of surgical luck and what if, this time, I die. I panic when Timm goes out, visualising the policemen coming to the door to tell me he has been in an accident. I think about the kids getting snatched, or hit by a car, or falling and cracking their head open on a kerb and never getting up.
And then later I am fine again. I cook tea, I write articles, I have meetings, I go for a drink, I speak to friends. I make plans.
Then it is there again. Terror, fear, panic. I sit in the garden at 3am to get some air, to overcome the stifling thoughts. Adrenaline surges through my body, and I can’t sit in bed. It compels me to get up and wander through the house, checking. Checking the kids, checking plugs, checking locks.
And on and on, the cycle goes.
Well, it is time for it to stop. And so, though I find it very hard to talk about, I am putting it out there. The events in our life have to have an effect on our mental and emotional health, I know there is no shame in admitting this, but it is still tough.
This isn’t me, I am not a worrier or a panicky person, I am ever an optimist and think things will be fine, so it is a shock to suddenly have these thoughts and anxieties.
I know I am not the only person going through this and I just hope that in writing about it, I can help someone else to speak out and get themselves help. I am not an expert, I have little experience in mental health, but I do know that when I have written about my physical health, that it has benefitted others, so hopefully in writing about this new hurdle, I can help someone else too.
Sam xx
Reading this was like reading something I could’ve written! I haven’t had any surgery for my IBD but had trauma when I was younger and since then I have the exact same feelings. Constantly worrying people I love are ill or dead if I don’t hear from them, always worst case scenario. Worrying about what could go wrong constantly and it stops you living your life. Well done on taking the step to see your GP and I really hope you start to feel a bit less anxious soon, it’s so draining worrying all the time x
” don’t feel depressed. I don’t think I do. When I speak to friends with depression, they talk of a lack of hope, of darkness and feeling stuck in a hole. I don’t feel that. I feel massively anxious. ” I’m wondering why that label is supposed to fit you and your friends diagnosis? Your arse isn’t the same, why should your brains?
Call it depression, anxiety whatever to give it a label, but I think that’s all it is Sam?
Aspirin works for my headaches, may not for you, ditto treatment for (insert label)?
Whatever, good luck finding an appropriate treatment.
Btw, I agree with your GP – if your head’s in a better place, any surgery is going to ‘work’ better, don’t you think?
I totally get where you are coming from.
Our stupid brains can turn mole hills into mountains the size of the Himalaya’s.
My anxiety attacks started occuring after my first peristomal hernia repair. I kept a bucket and towel permanently next to the couch in the lounge room because I felt constantly sick every time I thought of my next op (full hysterectomy) It was doing my head in.
My doc tried me on antidepressants, but they just increased my anxiety and added uncontrollable muscular twitches and full body shakes to the equation.
Then my psych taught me about mindfulness based cognitive therapy.
The skeptic in me poo poo’d it as just a bucket full of woo, but it really worked.
When an attack started I could have it under control in 5 or 10 minutes.
The next op I had, I didn’t get any pre op nerves.
I hope you find your inner peace soon.
Like you Sam I have had five operations all in quick session for colon cancer ended up with the jpouch, which I nearly died. Was in hospital for about 2months let home then in 2 weeks, back in with kidney failure they ended up having to take down the jpouch and I have an Ileostomy like you permently. I also have a very large hernia right behind the stoma which they want to repair but I told them I could not cope with another opp, so lthey left it for a while but said I would have to get it done in the end, They have told me they are worried as they are not sure what they will find when they open me up as I have so many adhesions as I have had so many opp. Like you my brain is all over the place. I wake up in the morning very tired as I don’t sleep very well, and as soon as my eyes are open I feel scared I don’t know what of or why, I get very teary also like you i worry about losing my husband or children although the are adults now. I think about this stoma and worry what will happen if I have this opp where will they put the new stoma as my tummy is so scared I have had one on the right side this one was put up high on my left as there was so much scaring. I can coupe with the stoma now but the new one my be a mess and my quality of life we be even worse. I have never spoken to any one about my feelings. I fill I should not be making a fuse as people are always telling I should be grateful I am alive , which I am, but it still hard some days. Sorry I am going on so much but once I started it all came out. So I do know how you feel Sam, I am sorry you are going though this as you are so young, I am a lot older but have been going throug this since I was fourty something. I have also had the stress of the fact that my two sons have had this as well I nearly lost my eldest. I have a gene which I passed on to them. I hope you get your head sorted out soon and you can get on with your life as best as you can. Thanks for this blog as I have never had any one to speak to or who new what it was like living with a stoma. God bless.x
I take it you have Lynch Syndrome as well.
It’s a terrible burden to carry. 🙁
Yes I do, only found out after my two boys got cancer as well as me so they tested us, my mother died very young also my grandmother who I never met as she died in her thirties. I feel very guilty about the boys as they now have to live with it eldest has had it twice also his lungs are damaged through his first bout of cancer when he was only 30 the younger one had it at 28. In some sense the good news is we all get regular checks now.
I have lived with UC for almost 20 years and take minimal meds for the physical symptoms – for the most part I am able to manage with diet and healthy head – good days, bad days, I continue to learn to role with it. Having said that, the ongoing level of low-grade anxiety that I experience as a result of simply being body-vigilant – knowing where the bathrooms are, making travel plans, making plans about anything that involves food or sleeping over anywhere with anyone I don’t know really well – definitely takes it’s toll. It seemed like my adrenal response became over-sensitive with all that vigilance, and they would kick in at the slightest thought; don’t forget the pay the mortgage, who’s picking up the kids tomorrow, what day is it? Panic panic panic. A year ago I asked my doctor for a low dose anti-anxiety just to see if I could get a break from that “fight-or-flight” hair trigger adrenal response. I figured I would do it for a year, give my head a chance to retrain the response – RESPOND rather then REACT. It has been great. I have felt spacier, I have not been as active, but the absence of panic has been amazing. I’ve recently started tapering off to half dose, and plan to spend the summer without anything to see how it goes. NEVER UNDERESTIMATE THE POWER OF YOUR HEAD and the fact that how you feel directly affects you physically.
What a massive rock and roller coaster you have been on lately with all the surgeries. It is no surprise it will affect you mentally too. Sending massive amounts of hugs. You are such an inspiration to many but most importantly you are honest and up front about where you are at. Thank you for sharing this xx
So glad you had such a superb gp, it could have been so different if you saw some other doc. Really pleased. And well done for getting there before the anxiety lead on to depression as well. The treatment for both is antidepressents, so hopefully in a few weeks you will be feeling more like yourself again. xxx
Hey all you warriors out there.
Im in Cape Town, SA, and my UC started when I was 11. At age 18 both my grandmom and I were diagnosed with UC.
I vividly remember the white enamel bucket that was filled with my grand-mom’s blood. That was 40 years ago. In the meanwhile, I lost my colon too, got a Jpouch and chronic pouchitis, and had three massive hernias repaired in December.
There are now direct links in studies between depression and IBD. In fact, they sometimes believe the physiological brain depression comes first.
Yes, Ive been on anti-anxiety meds for the past nine years. And I think: “Yes, you with the colon, so what about it? You should maybe go for a colonoscopy and appreciate your healthy body okay?”.
Of course you need a tiny crutch and support beam, Sam! You have every reason in the world.
I suggest all IBD sufferers should regularly see a psych. The loss of an organ or limb is a huge thing. We need to mourn for the lives we lost, in a sense.
If I did not take a little tablet, I would never sleep, be miserable company and spiral down and down. And I would go ballistic.
Big Pharma is sometimes bad but sometimes great. Thank heavens.
Lots of love to all of you.
http://curepain.co/crohns-disease-ulcerative-colitis-tied-to-anxiety-and-depression/
http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/
http://www.onbeing.org/program/eve-ensler-the-body-after-cancer/6050
http://www.iflscience.com/health-and-medicine/depression-mental-or-physical-illness-unravelling-inflammation-hypothesis
Well bloody done for taking that leap l. You are awesome.
And all of what you have said in your post. Normal.
Not a nice normal, but normal to have those thoughts, normal to feel that way and not surprising considering everything that’s happened. I have felt and thought similar things. At my worst days I would spend all morning hyperventilating and sobbing only to get in the shower before seeing a whole afternoon of clients.
I can’t say things are perfect and I Fucking hate this disease. I hate that it changed me and made me too scared to go on holiday with my friends. I hate that I’ll always have either UC or a bag.
But I am stronger because of it and no,I’ll never be the same. And that’s OK.
Your thoughts don’t own you and with time and help you will feel more in control of them.
Good luck with it all xxx
Hope you’re on the way to feeling better Sam?
Take my hat off once again to you for having the courage to be so open about what so many of us go through. I had severe anxiety and depression a while back and felt like I was weak or a failure. But when you think about what we go through in daily life and in facing major operations maybe it’s a normal response?
I tried to push myself to carry on and be ‘normal’ but think in the end my body was telling me to take some time out and be kinder to myself. I was put on medication too and it did really help (even if the first one made me feel worse) and I now feel much better.
Reading your posts really does help. I realise I’m not the only one going through difficult times. You’re a great role model and make a huge difference to people living with IBD. Massive thank you 🙂 xxx