amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: endometriosis


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I’m sorry, but I can’t see you

Trigger warning: in this post I talk about suicide and depression.

It’s been 3 years. When I got the text, it really threw me. I haven’t been able to sleep since.

Dearest W, I can’t believe it was so long ago when it still hurts so badly. In the first few days or weeks after you did it, I was still in a daze. I don’t think I really understood what had happened. Seeing you in hospital afterwards, well, those images I can’t get out of my head. But you are at home now, have been for a really long time. You’ve even grown so tall. But I can’t see you.

And although I live in another country, and we don’t come over very often, that’s not the reason why I don’t come in and at least say hi.

And it’s not because you can’t say anything back.

It’s not because you might not even know that I am there.

And it’s not the 24 hours nursing care you have that gives little privacy.

Those are all the things I tell myself to explain why I don’t come in to say hi.

 

You see, I’m terrified. I’m scared that this could happen to me one day too.

 

The lat time I saw you conscious, there was a look in your eyes that I also cannot forget: despair. Pain. Abject…. absence of good feelings. I remember saying to J that I wondered if you were ok, but something deep inside me recognised that look, and ran away from it. I’ve been there. That place where you just want it all to stop. Just stop. Everything.

I regret so much that I didn’t hug you in that moment. I don’t think it would have made a difference to your plans. But perhaps for a moment you would have felt something.

So W, maybe you are wondering why I can’t see you. When I recognise it and I know what it’s like when you can’t ask for what you need. When I know how even the smallest gesture can change your world. Why do I not come in to see you?

Well, my reasons are selfish. It hurts too much.

  1. When I see you, I remember my darkest days and I don’t want to remember them.
  2. The future for me is not bright, and you remind me what I am fighting against. And I really don’t want to see that either. My depression is linked to my other illnesses. My endometriosis and resultant IBS mean that I have inflammation in my body all the time. Did you know that inflammation and depression are linked? I didn’t know that either. Before.
  3. My illness is progressive. It’s a slow but steady march. Increased Endo, increased pain and inflammation, increased negative thoughts and apathy.
  4. When I get close to your door, there is a part of me that shrivels up and hides. I think it’s my courage. And it gets replaced with a middle aged, overly polite British person and suddenly I’m all “Ooh, best not disturb them. Don’t want to make any trouble”. And I am overcome with an inexplicable urge to pop to the loo instead.

This time last year I was in a much better place. Radically changing my diet, lifestyle, everything, was working. I’m still careful about what I eat, I’m exercising, business is going well, I’m socialising, and I colour in my colouring books (art therapy). All the good things I need to do to not lose my mind. Yet I’m losing it anyway. So I’m running away from the most powerful feeling I’ve experienced in my life: the apathy. I don’t want to go back to that place. and I’m sorry, but that’s where I go when I see you, or even think about you.

This is not the legacy you wanted, and believe me, it is not your legacy. This is all on me. This is all my weakness, my fear, my thoughts.And I’m so sorry for the truly awful thing of looking at you and seeing only me.

One day, I’ll be able to look at you and see you. See. You. I’m working on it and I don’t know when I will get there but when I do, I’ll come in and say hi.

 

Note: please don’t leave any comments on how to treat my Endo. I know what I need. And what I don’t have yet, I’m trying to get. It’s just hard to find. And I’m not suicidal. I just wanted to point that out to reassure anyone who is worried, but also to make a point: we can be in a dark place and talk about our dark thoughts. And we need to be able to do this without worrying about getting weird looks afterwards or being put under safe watch. That’s not the place I’m in. In fact, we need to be able to talk openly about this side of life. That’s why I’ve shared this today. This is just what I am carrying. You do not need to take it over and carry it for me. Please, just witness it. Just let me share, knowing that someone has heard.


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The balancing act of chronic illness

So if you’ve been following my blog you know that I am the queen of “give it time” and “fight for help”.

Waiting for your child’s health to become stable, for them to start eating, to stop vomiting…. it takes a multidimensional approach and time.

And sometimes, you just need to get in the doctors face and say “enough”. Now you need to listen to me and do something about the vomiting, not eating, etc.

It’s a balancing act and it requires a lot of strength, patience, and fortitude.

Well, it turns out that I’m pretty good at doing that for my daughter, but not so good for myself.

My endometriosis, IBS, and depression got really bad a couple of years ago and I took action. I tackled the IBS which helped the depression (did you know that there is a link between inflammation and depression? Well that’s were my depression was coming from and I changed my diet to reduce inflammation en voila, I felt physically and mentally better).

The diet change for the IBS has also alleviated some of my endometriosis pain. It’s brought it back from constant and excruciating, to just pain most of the time and manageable (manageable for someone whose just so glad not to be in pain everyday).

Which means that for the gynaecologist I saw in Jan, I am no long “sick enough” for them to offer anything other than pain ills and contraception.

Nice. I’m contraindicated for both. Thanks Mr and Mrs Specialist. How is that I understand my illness and medical records better than you?

So I’m currently caught in this other type of balancing act:

  1. If you help yourself, you are no longer sick enough for the doctors to help you

  2. If you don’t help yourself in every way you can, then you are in a lot of pain

How do I find that sweet spot between

being seen as ill enough for the doctors to actually do something

and

not being in excruciating pain?

LIE. Just lie about it.

That’s another balancing act for people with chronic illness:

Truth versus Honesty

So at my next appointment I’m going to describe how it used to be. Pretend that I still have it. Because endometriosis is a progressive illness, and it creates inflammation in the body.

The truth is, I need help. But honestly, it’s not as bad as it was.

But as I wait, I can feel it getting worse. Both the physical pain and my mental state.

And do you know the worst thing about depression? It robs you of your will to do something to help yourself.

Actually, this is the worst thing: you start to feel worse. You are also quickly losing the capacity to take action and help yourself. You feel the darkness coming and you do nothing.

Well, I’m not doing “nothing”. For starters, I’m writing about it. Writing really helps me to get clear about what’s going on in my head, in my body, in my soul. It’s a way for me to figure out what to do next. So now I know. Lie my pants of and make the doctors help me.

cropped-10202851.jpg

 

 


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Lady gardens and useless doctors: Endometriosis, I’m coming for you

In an attempt to not try and solve all my problems by myself, I went to the gynaecologist today. Warning: contains references to lady gardens and annoying doctors.

It’s always such a weird experience. They ask you to go behind a little curtain to take off your trousers and knickers and then just expect you to walk back into the room with your butt hanging out. Why even have the curtain?

It was only as I was hanging my butt out that I realised that not only do I need to trim the rose bush in my garden (literally. the branches are too long and the kids can’t get to their play house anymore. Yes! I’m talking about a real garden here), but I haven’t been paying attention to my other “gardening” needs. The lawns a mess and my legs are so winter ready that I can plait them.

Well, f it, I’m going to be uncomfortable, we might as well both be uncomfortable.

When I made the appointment I didn’t give any thoughts to maintenance or what “it” looked like (I mean, apart from those who vagazzle, who does?). My primary thought was, will they actually help me?

And after the pokes in the belly and examinations into too many holes, I’m back where I started: I’m going to have to figure this out for myself.

My endometriosis is getting steadily and painfully worse. Still, the only options they gave me are are hormones/contraception or pain killers.

With the severity of my morning sickness with S, I’m not touching hormones and the pain killers are just going to make my IBS worse. And honestly, it’s the IBS that I’m trying to fix.

IBS has many causes and I have successfully dealt with the food related causes. Drastically changing my diet and excluding the WIDE range of foods (thank you Montash University and your fodmap app) meant I was completely symptom free from July to Sep this year. Woohoo! That’s after years of constant symptoms. I never thought it would work. But it did.

But my endometriosis is getting worse and since the summer, the pain has gone up drastically. My IBS symptoms, although a little different, are back.

And my poor gut health lead to my poor mental health. And I’m not going back there. My mind means too much for me to lose it again.

Which is why I was prepared to get poked and prodded today. Because IBS is a symptom of/caused by endometriosis.

So what did this doctor tell me today?

There is no link between endometriosis and IBS.

WTF? Every teenage girl in the world knows there is a link between menstruation and digestion: we feel it every month.

This whole appointment really triggered my

“oh for f*cks sake, I’ll do it myself” reflex.

It’s a really strong trait of mine that I have been learning to let go. And I’m getting pretty good at it. I am a reformed perfectionist after all.

But even as I was muttering to myself

why did I bother?

I realised that the problem wasn’t with asking for help. I just clearly asked the wrong person.

So now I’m on the hunt for someone who does understand the link, that is willing to look past the standard approaches, who’s willing to work with me to find a solution that fits my needs.

So wish me luck. I have no idea where to find them. But my mind is at stake so the quest begins.

docswithoutdiplomas

p.s. perhaps it wasn’t fair to ask him if he’s ever had a period. But if only I could get him into one of those labour simulators… then maybe he’d see living with pain, cramps and IBS a little differently.

 

 


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Gluten free: what’s with all the potato?

Am I jumping on a fad? No. And I’d be really late to the party if I was.

But let me give some context.

Since the age of about 14, I’ve had monthly episodes of IBS. Relatively mild and manageable. Well, ok, it was disruptive and painful but I put up with it.

It was manageable until I had my eldest, F. During my emergency c section I got a lovely bonus gift of endometriosis. Of which a side effect and symptom is IBS. So my IBS spiralled and grew and got so bad that I had pain and discomfort everyday, all day.

And like any health conscious, aware, parent of a sick kid, I went and got it checked out straight away. As soon as it became unbearable. Not a moment later.

But there isn’t a cure for IBS. And whatever the original cause, the best way to help reduce symptoms is to change your diet. So I took on board my doctors advice to eat crudites (yes, that is really all he said). I started googling IBS and even joined and IBS support group. Wow! those people really suffer! Their stories scared me away.

I knew I needed to make a big change and I needed the head space for it too.

So as a health conscious, aware, parent of a sick kid, about 2 years later I got there. I needed to eliminate foods from my diet.

So last October I started the FODMAP diet. My understanding of it is this: basically you are avoiding foods with excess dietary sugars that can ferment in the gut and cause bloating, cramps, a spastic colon, inflammation …….

It took me a long time to get my head around it: give up certain foods, possibly for life. For the sake of my health.

It should have been a no brainer. Don’t eat that, feel good.

It seems like a small change but it’s massive. It affects the whole family, how we do the shopping, how many meals I need to cook each day. And I’m not even going to mention going out to eat.

And I can’t remember all the foods I should avoid so I use this app. But that’s for another post.

This post is about gluten free food and the surprising amount of potato.

Wheat is a big NO NO for IBS. So I had cut that out. And I found an alternative, Spelt. It’s a relative of wheat and hasn’t been genetically modified the way wheat has been.

I was eating limited amounts of spelt bread and doing ok with it.

100% spelt. Check the ingredients people! Marketing people lie. “look! buy this spelt bread, it’s so healthy!” they say and then on the back you see “made with 50% wheat, 10% spelt flour…”

But my nutritionist asked me to go gluten free for 3 weeks. Why? Because although I may not notice any problems with spelt, the gluten in it could still be doing damage to my irritated and inflamed gut.

So I did it. And I felt great. Really good. A real uplift in my mental health too.

Then I had some wheat and spelt. And it hurt. A lot.

And that just sucks.

So, I decided to check out the gluten free offerings. I love rice, LOVE IT. But sometimes you just want some toast. I was missing “bread” type foods.

And that’s when I found the potato conspiracy. It’s in EVERYTHING.

Those crackers look so good. A mix of potato, rice and a million other things. It looks good. But don’t be fooled. They are solid stodge. Heavy and with this really weird texture that makes me think of potato dust.

Potato dust

When I was a kid I worked in my parents corner shop and bagged potatoes. Took potatoes from a massive sack and bagged them up into 5lb bags. I loved that task but my nose would fill with that potato smell of good potatoes with a coating of mud – they stay fresher for longer that way.

But I don’t want to eat potato dust.

And the bread. Oh it looked so promising. And although it felt dense, I didn’t mind. I like slightly dense bread. It’s like you can feel the wholesomeness of it. All those whole grains.

So I toasted some gluten free potato bread. Spread my salted butter (oh Clover, I miss you. Did you know that in Holland everyone uses unsalted? yuck)

And…. potato dust. Heavy. No crunch.

The texture is just awful. It’s a bait and switch. It’s like they put all the effort into making it look right and forgot all about the taste and texture.

So I’ll just have to content myself with rice crackers and give my gut time to heal. I know this is going to take months, possibly more than a year. And then maybe I’ll be able to have spelt.

So for all those coeliacs out there, like my sister S and fellow blogger C, I’m starting to get what life is like for you. Gluten is everywhere. Like those damn potatoes.

potatoes