The Work – Life balance… with Crohns

I’m back at work after being away for 3 months. It’s been a good 3 days so far… easing back into all the work. As a teacher, being away feels really hard because your job is about investing yourself in others – I must say that the first few weeks that I was away sick in hospital, I was finding it hard to let go of work as I kept thinking that no-one can do what I do while I am away. Not trying to sound up myself or anything, it’s just a major attachment to your work and feeling like you understand your kids and know how to cater to them so that they learn. I am sure in other jobs that people invest a lot of time and energy into that it would feel similar, and that putting your trust into someone else to fulfill your duties and work to your standard is challenging.
But this feeling of “I need to go back to work – think of the children!’ really dissipated after about 3 weeks. Now that’s a BLOODY long time to let go! I kept wishing myself to get better quickly so that I could get back to work. And I soon realised that me wanting to rush this process of healing was really not a smart move. Luckily for me, the Vice-Principal was insistent that I take as much time off as possible – she told me not to think emotionally but to be rational – healing takes time. And even though my family and friends were telling me to “just take the time off!” “do it! you need to get better”, it was really hard. I KNEW that I needed the time, I knew I had surgeries to do, treatments to trial and doctors to see, but in those first 3 weeks I was fighting being sick. I didn’t want it, so I was pushing the reality away (in DENIAL AGAIN!!! See how much I hang out here?!) and was trying to convince myself that I was feeling better and stronger than I actually was.

Unless you are sick, no-one quite understands what it feels like. To feel like you can’t quite function like everyone else in the world is a horrible feeling. It’s a feeling of hopelessness and that vulnerability you feel makes you push yourself. And sometimes this is a good thing because it makes you proactive to get better, to deal with what needs to be dealt with… but sometimes it’s a bad thing because you push yourself before you are ready. Taking the time to heal is SO important, yet it is the hardest thing to admit to yourself.

For me, not being able to go to work, that is, do a job which people do on a daily basis, was just the extra confirmation that I didn’t want that I was sick. If I couldn’t function like everyone else, then I failed at life. I remember even crying in the car with my mum on the way from one doctor to go see another doctor and telling her that I felt like a failure. And she cried too and told me that I wasn’t, but I felt that way because all of a sudden being sick again meant that I couldn’t work, I couldn’t physically drive to my appointments because of the pain, and this dependence on everyone around me (“why can’t I depend on MYSELF??!?! How could I DO THIS to myself?!”) made me feel out of control. And that scared the shit out of me. Because I wasn’t “normal”.

There was clearly something wrong with me, because a month prior I was feeling fine, and now I was dealing with the Crohn’s again. It’s like this separate part of me that just gets in the way of me from time to time. And I think this separation of it from my being doesn’t help me deal with it. So I’ve had to start thinking about my Crohn’s (it’s now MY Crohn’s instead of THE Crohn’s) like a virus… it’s always in my body but it sometimes rears its ugly head… like herpes! It’s always there, and it’s a management issue. But this revelation of dealing with it as a part of me has only come recently, and it wouldn’t surprise me that as I ease back into remission, that I may revert to my old ways of dealing with it as a separate part of me… time will tell, and now that I have this blog, I have written it down to remind me where I cannot go back!

But anyway, back to work – after those first 3 weeks and letting go that I wasn’t going back to work, and dealing with that emotional situation, it was my acupuncturist who helped put things into perspective. As I was lying there, getting treatment, and started to cry that I felt like my sense of purpose (contributing to society by working as a teacher) was rattled, she told me that if I can’t work as a teacher, I will still find something that makes me feel like I am contributing to society. She reminded me that I am the type of person who won’t just sit back and do nothing, that if I cannot physically teach 5 days a week, I’ll find something else to do that’ll give me that same sense of purpose, and that I just have to forgive myself that it isn’t what I initially thought it would be… WOW! Did that give me strength! And then my best friend suggesting I write a blog… it all came together.

The universe delivered to me something that I could do, while away from my job, that would also give me a sense of purpose. And yes, I will not be making money off this blog, but it sure helped in the interim while I felt like a ‘failure’ because I couldn’t function like everyone else. And all of a sudden, taking time off work didn’t seem that scary or confronting anymore. I embraced it and got excited about healing myself. I had good sleeps whenever I felt tired, I had salt baths when I needed to heal the area, I could lie around in bed and deal with pain better, I could visit doctors without the anxiety of leaving work or returning back to work on time, I could get a massage when I felt better, do a yoga class when my strength returned, I could cook new foods while starting my new diet of eliminating everything I used to eat, I could write this blog… and then before I knew it, I was sooooo much better and healthier… and happier! I had allowed myself the time to get better… I wasn’t in a rush to get better, to force myself to pull it together before my body was REALLY ready to go back to life pre-relapse.

So if you are going through a relapse, I understand the emotions you feel. You do feel ashamed because you can’t control what’s happening in your body. You feel guilt because you feel like a burden on the people around you. You feel embarrassed because a month before you were bragging to everyone how well you felt. You feel anger that it’s out of your control. You feel fear because you don’t know if you will feel better soon. You feel depressed that you can’t participate in things happening around you (I missed a good friend’s 30th while I was in hospital and I felt so sad about it… and spending a weekend in hospital is a horrible feeling. Thank god I had wonderful friends and family visit me – get your support network around to your hospital! Call them and tell them you need them! It makes a world of difference).
These are the emotions that I definitely experience when I am sick. They’re horrible, and very foreign to me, as I consider myself a very optimistic person. It’s amazing that in an instant EVERYTHING about who I am can change! But it doesn’t last forever. These horrible emotions will pass, but you have to accept them first, be patient with them (go get acupuncture and energetic healing to help the process too!) and then those emotions will actually be your SAVING grace, because they will propel you to start being proactive and start the healing process. They are both a blessing and a curse.

So if you’re dealing with Crohn’s or any other auto-immune illness, you need to find a lot of TRUST. Trust yourself that your body knows how to get better again, and that it will. Trust that the people around you DO NOT feel like you are burdening them! Trust that the universe will deliver some other purpose or some other job that you can do that can best suit your life and lifestyle, if you cannot return to your ‘normal’ work. Trust that other people will be able to do the work for you while you take the time off that you need to get better. And trust that you’re going to get through it. You always do. It’s a cycle of relapse and remission. And I sure as hell love this remission bit!

Reactive vs. Proactive

My blog yesterday outlined my thought process when signs of my Crohn’s pop up. My first thought starts with panic, the second is reassurance, and then finally, putting strategies into action. I should’ve probably clarified that being ‘reactive’, in the sense of reacting quickly to do what’s necessary to get on top of these flare ups (being proactive to call your doctor(s), resting etc.) is a really good thing, but being EMOTIONALLY reactive is NOT a good thing.

Even though my thought process involves me reassuring myself that I’m going to be ok, I realised today that it ACTUALLY doesn’t help me REALLY feel ok. I may be saying all the right things to calm down so that I can think rationally through what my next steps need to be (which is great), but then after I put things into action, I don’t go back and address the initial emotional outburst. My reassuring words have not yet figured out how to convince my psyche that I’m ok.

So I went into hospital yesterday afternoon to start my Humira injections. I had an allergic reaction to the Infliximab (a medicinal infusion administered every 8 weeks in the hospital) a couple of weeks ago, so this treatment plan is the next option. It requires me to self-administer an injection every 2 weeks, for how ever long I need it, or until my body creates antibodies and rejects it.

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So basically, after having my freak out in the morning, making all the necessary appointments, I had convinced myself that I had done everything necessary that I could possible do for the day and that I was in control now. WRONG! Turned up at the hospital for my first lesson in Humira and how to inject myself, and clearly was still in panic mode. Luckily my gastro doctor (Dr. Alissa Walsh – super lovely!) was there at the IBD clinic in St. Vincent’s Hospital, and I told her my concerns with the symptoms I had. She had a look and said that the medicine in the injection should clear it up, so it was a good thing I was in today to start it all. Phew! I could now cancel my Thursday appointment with her since she just saw me, and she has given me the all clear. Sigh of relief… NOT GOOD ENOUGH! I didn’t realise that the anxiety that I had built up ALL morning would need MORE than the doctor’s prognosis as she looked up my butt. Even the nurse said I looked really anxious… she actually said to me “You look like you need a bowel prep!” – which means, I looked like I was constipated (gee, thanks!) because I was clearly straining my face with anxiousness. And then, the 4 injectons that were INCREDIBLY PAINFUL just tipped me over the anxiety edge. And I had a meltdown.

I tried to keep it hidden… I was holding back the tears as I was putting the little band-aid from the nurse over the injection site that was throbbing and already bruising my stomach… I picked up my bag and looked to the ground and kept my voice cheerful as the nurse explained that she wanted me to stay in the waiting room for another 30 minutes to make sure I didn’t have an allergic reaction. As I scuttled towards the waiting room, I made a detour to the toilet. Unfortunately, this unisex toilet was the only one available to the WHOLE waiting room, so I knew I wouldn’t be able to stay in there for long. And because of it’s close proximity to where people were sitting, I knew I couldn’t cry loudly. So I sat on the toilet, grabbed tissues and quietly sobbed, reminding myself to keep it together. After a fraction of time, I took a few deep breaths and emerged, back towards a chair in the waiting room. The nurse that had been with me helping with my injections spotted me all red eyed and sniffing and sweetly offered for me to move to another area so that I could have some privacy. She brought me tissues and sat with me and just talked me through it.

Crying made it feel soooo much better. I just needed a release! It was all just a bit too much for me today. Even though I had made all the right steps to ensuring that I would be checked over, I hadn’t nurtured the emotional side of my symptoms. I was trying so hard to be brave, to keep it together, but obviously that freak out and panic at the start of the day stayed with me until the afternoon when I finally cried about it all. It’s AMAZING how much emotions play a part in our well-being. Even if you say out loud (or even in your head) positive words of reassurance, if you don’t believe them, your body will manifest dis-ease (pun intended).

I haven’t tapped into the secret of how to reduce an initial emotional reaction, let alone how to release it quickly (except crying really does help), and I am hoping to learn! I’ve heard meditation aids in this process, but I am not yet at that stage of utilising it. If you know another method of how to NOT absorb emotion into your body so that you don’t get yourself into a state, please let me know.

What does help me emotionally process everything is by talking to my sister, who is the wisest person I know, and it helps too that she’s a psychologist…she knows what questions to ask and how to guide me out of a negative thought pattern or emotional state. If you have that someone who can help you process it all, whether it be a family member, a friend or a therapist (Crohn’s is known for causing the “Why Me?” mental anguish, so visiting a professional counsellor is encouraged) who you know won’t feel burdened from hearing it all, get the help you need from them. I also use acupuncture and energetic healing to help release the emotional contraction in my body. Yoga or your favourite exercise can help too, but for me, this is only a temporary release. Meditation and prayer would do wonders too, but I’m yet to master those as well.

Being PROACTIVE to your physical and emotional needs is important in dealing and healing with Crohn’s, but being REACTIVE is much more challenging to subdue. Being emotionally reactive is exhausting and traumatic on your body and mind, and I need to create a different thought process that STARTS with reassurance, rather than with panic. Or at least go back and make peace with the initial emotional thought. If you can help me figure this out, let me know… in the meantime, I’ll give my sister a buzz…

During my periods of remission, I feel great! Healthy and strong and “normal”. In remissions, I feel like I am in control, like I don’t have Crohn’s anymore, and that I have unlocked the secret to staying healthy. How quickly I forget! It’s like I am SOOOO positive and optimistic about it that I actually avoid being realistic about having a life long autoimmune disease! It’s super annoying that I live in denial land so regularly…

I’ve felt so good in remissions before that once I actually halved the dose of my medication on my own, without my doctor’s permission. Even for a period of 6 months, I completely stopped taking any Western medicine as treatment. I was feeling really toxic on the meds that I had been on for 9 years, and figured that eventually I will have to wean off them, so why not start the process now? #dumb
In remission, I even start referring to my Crohn’s in the past tense “I did have Crohn’s…” and “I don’t have Crohn’s anymore”, because I honestly convinced myself that through my positive languaging and an honest awareness of my body, that I could do it. *Sigh*. Don’t get me wrong – being optimistic, using positive language and keeping aware of your body does tremendously AMAZING things to it. But it ALONE cannot cure Crohn’s. It’s a balance.

So during these periods of remission, I aimed to watch what I ate because because I had known for years that gluten and dairy flare the situation. And processed sugar was the devil. I had read about it, heard about it, doctors and healers had told me… so I wanted to take it on board and watch what I ate…
To be fair, I talked a LOT about eating better, but rarely put it into practice. I was on a “reduced” dairy and wheat diet, as opposed to eliminating them. I ate fruit (healthy right? WRONG! Way too much sugar for your digestive system) with coconut yoghurt instead of regular yoghurt (Coyo is seriously the best invention! Go buy some now!), I ate more salads (healthy right? WRONG! Raw food is super hardcore for your digestive system to breakdown), allowed myself the cheat binge sessions (hey, I’ve been good all week…) which saw me devouring a bag of Allen’s ‘Party Mix’ lollies (oh how I miss you…). I thought that I was eating relatively well! No, no, no… if you’re going to halve your meds, and stay super positive about it (mind over matter), you HAVE to support yourself with your diet. Now, I’m not encouraging anyone to do what I did and make random decisions about the status of their heath, (because in the end, it didn’t work!) I’m just sharing my experience because anyone with Crohn’s, or an illness, will tell you that they just get to a point where they don’t want to deal with it anymore. It’s like denial wrapped in determination to prove your doctors and your body wrong. But really, the point I want to get across here is that diet is a HUGE factor in managing your Crohn’s…. HUGE!!! What you eat really affects your insides! I know this is a fairly obvious point, but seriously, most of us don’t live by it.

To be fair, it took me AGES to see the connection and actually want to do something about it. I had countless people tell me that gluten and dairy and sugar were bad for Crohn’s, but because I didn’t feel unwell after eating them, I thought I was in the clear. I was younger and didn’t quite understand how diet really affected our bodies, especially because I was taking medicine and vitamins as well. Surely all that helps negate the bad shit I’m eating? The medicine is meant to make the symptoms go away. WRONG! I needed to help my body from every aspect, and not just depend on medicine and supplements. Eating crap while on your medication is like someone rubbing salt into a wound, or an alcoholic continuing drinking even though they’ve been diagnosed with a liver disease! They’re thinking “Well, I’m taking medicine to help with disease”…but the alcohol you’re drinking keeps feeding the disease!

I guess eating like everyone else was eating helped me feel normal… no one would have to know I was unwell if I was doing the typical social things (like eating and drinking) with them. What finally tipped me over the edge to change my diet was my recent relapse after a wonderful and beautifully long remission. I was now also older (hopefully wiser!) and ready to take on the responsibility of caring for myself and my health. I had access to research different studies and health websites and blogs and learned from health experts how diet can change your life. I now had access to the resources that I would need to have an alternative diet. Thank god we live in a world where there are supermarkets that are dedicated to alternative food options! Now you can go to restaurants that specifically cater for a paleo diet, vegan diet or even offer gluten and dairy-free options! 10 years ago this would’ve been extremely difficult, you would’ve been that wanker in the restaurant that the waiters and chefs roll their eyes at, and you just would’ve been a freak amongst the company you were with!

Another thing that woke me up to my diet was a recent food allergy test I did via my blood work. From this blood test, you can see that everything that exceeded the green colour zone was food that my body was reacting to. It looks all crumpled up because I carry that piece of paper with me to remind me to keep strong if I’m craving a cheesecake!

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I was sensitive to EVERYTHING I was eating! While my Crohn’s was in an active state, my immune system was attacking EVERYTHING foreign that was entering into my body, including the food I was eating! This meant that I was staying in an inflammatory state and I was creating a weakened and leaky gut from the food I was eating. I even told my doctor that I didn’t feel bad eating these foods though! Milk was the only thing I ate that I felt immediately bad after. And then she told me that I may not have have physical symptoms but my body is feeling it on a microscopic level! The blood work proved it! She said it can take up to 2 weeks for your body to respond to the food that you put in, and by that stage, you can’t remember what triggered you feeling unwell in the first place! When I got these results, I cried. I cried for a couple of days, mourning the loss of my favourite foods. I honestly didn’t know how I was going to do it! I now had to eliminate the following: gluten, dairy, fruit, processed sugar, nuts, dry beans, soy, corn, potato, eggs, mushrooms, yeast, chocolate, alcohol and coffee. YES! EVERYTHING! hahaha… but I turned my focus around to look at the things I COULD eat – lots of meat (I had a protein deficiency as well) and vegies, rice, buckwheat, sweet potato, honey, stevia, coconuts (absolutely adore!!)… it seemed restrictive at first but in actuality, it isn’t that hard. It helps that my husband is eating my diet, which we’ve labelled as being basically Paleo, but minus the eggs (but I can eat duck eggs, which are awesome. Kingsley’s Butchery in Rose Bay sell them, as they are hard to find!). So focusing on the good things you can eat, and not on the things you can’t eat, will help you get through the change in diet.

Another thing that pushed me towards the “I need to do this NOW” about my diet was the fact that I got recently married…it stopped being about me. I wanted to have a healthy life so I can be with my husband for as long as possible. And then I want to start a family one day. I cannot be in a sickened state and have a baby! Majority of the medications I am on will poison any child that I would want. I have to be off the meds for at least 3 months prior to even conceiving. It has to happen when we plan it to happen. I have to be super strong and healthy so that I can grow a baby inside of me! Every doctor I’ve seen recently I’ve had to tell them that I want a child in the near future, so they know which medications to put me on that are safe for having children with. I’ve already been told that I won’t be able to have children naturally and that I’ll need a C-section (no problem with that) so as to avoid ripping apart an already weakened area…and THAT was a wake up call for me that it’s more than me now that I have to think about.

I know its hard, trust me, it’s taken me 14 years to actually see and feel the difference that my diet has an affect on my constitution! So no shame if you’re not ready to change the way you eat! But I feel so good now, I can’t believe I didn’t try it sooner! You may feel fine eating what you are eating, but can you believe me that you can feel even BETTER when you eliminate the bad foods from your diet? DO what you need to do. Don’t just TALK about it.

When you get to a stage where you feel “I just don’t want to feel this bad anymore” then make a CHANGE. Just do it! When you get to that stage, whenever it might be, it’ll be worth it. I know people want to learn on their own and with their own experiences, but I hope this blog helps inspire you to get to that stage… it took a few key things to set off the “I NEED TO DO THIS!” urge, but I’m here. Finally. I am going to take control of this Crohn’s. From every direction – medicine, diet, exercise, rest, energetic healing, supplements…this is my magic formula.

With Crohn’s, its all about remissions and relapses. The relapses will happen in time (until they find a cure!) but the main idea is to stay in remission for as LONG as possible. And if eating differently manages symptoms, supports my immunity, counteracts side-effects of medications, then hells yeah, I’m going to do it! I hope you do it too… when you’re ready.

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