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Chronic illness: the parts we don't talk about


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Kids, I’m going out, without you

Now this is a post I drafted a couple of years ago while on holiday with my family, camping in De Veluwe, a beautifully wooded area of The Netherlands. One afternoon, I escaped and loved it. So here are my thoughts on why I don’t want to be with my kids all the time. Taking time away from my kids has been my saving grace, in recovering from burnout and to staving off care-giver burnout. It’s how I stay sane and happy.

I love my family but I don’t always want to be with them.

Once you’ve had kids, it seems to be that all your friends have kids.

It’s not that all the people you know also had kids. Nope. It’s that somehow, over time, you lose touch with the childless friends and start hanging out with other mums.

Which I love. They get me and I’m very happy that I have found my mama tribe.

Yet there seems to be this pervasive sense in the world that once you’ve had kids, all you’re supposed to want is to spend all your time with your kids.

Well bugger that. I don’t.

I love my kids. AND I love my time away from my kids too.

I want to spend time with my friends. Working. Doing the shopping on my own (oh the horrors of toddlers and shopping!)

I want to be by myself.

So we’ve been camping for a week and started to feel antsy, that I just want to get away. Everyday I watched the kids leave our camping spot to join the activity team or to play on the bouncy castle (yes, this is camping heaven for kids and parents) a voice inside my heart whispered

I want to go off and do something too

So I sent J to go and be with the kids and I went off on my bicycle made for one.

It was wonderful.

I could go in any direction I wanted.I could slow down and admire the sunlight through the trees of the forest I was cycling through. With no-one asking me what’s wrong. No racing to catch up with the rest of the family.

So I stopped. I admired the sunlight. Dappled, that’s the word. Gentle shadows. Glimpses into the deepness of the woods. So many shades of green.

The smooth new path. The bumpy, cracked concrete where the roots are pushing up.

The silence.

Oh, the silence.

Soothing. I can breathe here. I feel unfettered. Loose. Flowing.

I love to be alone.

Kids, I don’t hate you, I don’t dislike you. I love you, more than you can imagine.

And I also love to be alone. A lot.

So just as you go and play, so will I play. In my way.

Alone.

 

 


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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.

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What’s different about chronic illness? No.6: When going out could end up with you in adult diapers

You’ve been busy lately and you’re winding down and settling into some rest and recovery time.

Then something terrible happens: you get an invitation. To a party. With other people, probably also people you don’t know and who don’t know you.

If you are asking “why is this a problem?”, then you have never run out of spoons before.

When you are chronically ill, management of your spoons is important. And so is living a full, happy life. And we want it to be full, don’t we?

So this invitation has come along when you are just out of spoons. You yearn to go, let off steam, have some fun. Your good friend has turned into a devilish temptress telling you

it won’t be the same without you. please come. We’ll all have a fantastic time if you are there

Now, even if they don’t say those exact words, it may feel like this. Because you want to go.

To go or not to go. That is the question.

Do you say no? Disappoint them? disappoint yourself? But take care of yourself because you’re out of spoons and what you really need to do is chill out and rest.

Or do you say yes? And go, enjoy yourself, but in the process get so used up and knackered that you are going to spend a week in bed. Silently wishing for an adult nappy

so that you don’t have to get out of bed to pee…

(No! not in that adult baby fetish way. I was going to add a picture for a laugh but I googled it and it was just too disturbing.)

And if you say yes, you’re going to have to borrow against future spoons, using energy you don’t have yet so that you can stand upright, smile, laugh. But borrowing future spoons is like borrowing money from the mafia.

The interest on your future-spoons loan is going to cripple you.

That simple invitation has turned into a poisoned apple.

Finding Shades of Grey

Now I’ve been living with a cocktail of energy draining, sometimes debilitating illnesses for some years now (IBS, Endo, depression, perfectionism and its burn out consequence) and I’d be a hermit if I hadn’t learned to adjust. And with my eldest daughter having a seriously intensive chronic illness, I couldn’t afford to keep on using up my spoons. I had to make a change.

I have always been a full on, “if you’re going to do something, do it well” kind of person. And although I thought I was lazy, my standards are sky high (that’s why I consider perfectionism an illness).

I was a very black and white thinker. But luckily for me, my eldest taught me how to think in grey.

So now when I get that invitation, there is another dimension to my choice of go/don’t go. I have multiple options:

I can go and be lively, chatty and dare I say funny.

Or I can go and find a comfy chair and chat quietly to one or two people.

I can go for an hour. ok, it always ends up longer but I blame that on my #shopkeepersyndrome (you’re the shop keeper so you can’t leave first, you need to be there for others and need to be the last to leave – when it’s closing time and you have the keys). But I can now leave a party early.

I can stay at home and arrange to see them another time.

I can just say no, no explanations, but I’m sorry that I can’t come.

I can even stay at home and actually rest, go to bed, sleep.

So many shades of grey. So many options.

None of them requiring me to resort to adult nappies because I’m too exhausted to get out of bed.


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Why being cured isn’t always the happy occasion you expect #Mondayblogs

This blog is all about living with chronic illness but what happens when you get better? It should be party time right? Life is wonderful. This is what we have been praying for. It’s celebration time, come on! (cue Kool and the Gang).

Yet, it’s not all party and celebration. You actually land in a world of mixed feelings. You’ve lived with this for so long, and now it’s gone. A big part of your life has disappeared and it’s replaced with emptiness.

It’s not a sad emptiness though. It’s kind of exciting. It’s a

Oh my god, what can I do with all this extra energy?

kind of thing.

And with that excitement comes some fear. You see, there is comfort in the known. Better the devil you know and all that. In this emptiness, anything is possible. So that means it could be both good and bad. And it probably will be both good and bad.

There are two common thoughts that run through our heads and I experienced them both last year.

  1. Is this really over?
  2. Oh my god, it’s over. What now?

1. Is this really over?

in 2014 I started an exclusion diet for my IBS. I was in pain everyday and the inflammation was making me depressed. As in, need medication because I don’t care to live, depressed. Cutting out foods from the high FODMAP list really helped. And by June 2015 I was symptom free. It was an amazing feeling, to be pain free! I was in an almost constant state of bewildered surprise, thinking

So this is what it feels like to be normal?

Until September. When my endometriosis hit a tipping point and triggered my symptoms again. So I’m actually now back to daily pain. I’m still excluding the high FODMAP foods (otherwise it would be excruciating). The pain is also different. I can feel that it’s coming from the endo; its a very specific kind of pain.

So, it’s not really over. Not this pain. And while I really enjoyed those pain free summer months, I still feel a little bit knocked down that all my work didn’t lead to a cure. But I’m picking myself back up. It’s a slow process; the drop from my euphoria was quite high.

2. Oh my god it’s over, what now?

In October last year I came of my depression meds. I was on them for 1 year. Although I hated the being on them, the hate was aimed at the necessity and the side effects. My mood was stabilised but it was stabilised at a constant, low level grump. I had a small frown on my face all the time.

And I was constantly hungry. I wanted (and did) eat all the time.

My main therapy was my exclusion diet and it worked. IT WORKED! I’m still so excited about it that I needed to shout that. Certain foods that were causing inflammation in my gut (hence the IBS) were also affecting my brain and mood. I can guarantee now that if I eat gluten, I will become miserable (I just did a gluten test with spelt at the new year and ended up feeling like my life was pointless).

So in October I came off my meds. I was so excited about doing this, and yet there was a whisper of concern. Subconsciously I was thinking

I’m never going to feel sad again. I can’t feel sad again because now I’m cured.

It doesn’t make sense but this is what was going through my head.

If I don’t need the tablets anymore, then I must be happy.

Which is true, but there was a hidden “Always” in there. That I must be happy, always.

Now that I had finally reached this stage, I am no longer depressed, it was scary.

So what am I now? My depression didn’t define me, but it also took up a huge amount of my energy, time and attention. Now that it’s gone, it’s left a big hole. This leaves me with the big philosophical question of

What is my life all about? What’s next?

So yes, I know and have accepted that I will feel sad, blue, down in the dumps. It’s normal. It’s the blackness, the heaviness, the apathy that has gone.

So now I’m enjoying the absence of apathy and blackness. I’m having a look around at the colours. I’m trying to figure out what to do with all this extra energy I have.

I must confess, this last week I wasted a lot of it. I’ve been so used to struggling that I became a little lost. And the irony? I struggled because the struggle was gone.

So if you know someone who has just had good news about their health, please don’t be surprised that they are not celebrating.

They are wondering if it will last.

They are coming to grips with the vacuum.

Don’t expect them to be over the moon. Don’t expect tears of joy. It will come. Give them time.

 


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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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The little white lies

On Tuesday I was talking to someone and mentioned I was at the hospital. People always get alarmed so I usually say “it’s just routine stuff”.

Because it’s not an emergency. These are planned visits.

But this was my “routine stuff” visit yesterday:

after months of therapy and hypnosis, take my 8 year old to have a procedure that she is absolutely terrified of.

That’s my routine.

It was difficult a day and here’s what I wrote.

But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.

So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.

So we’re going to see if we can do this with laughing gas, to put her under.

The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.

Putting aside my feelings, I was really clear to hear:

it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.

But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time travel and this is what she wants to do with it.

So creative.

So scared.

And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.

Here’s another white lie I tell:

I’m just doing what any parent would do

I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.

Here’s a final white lie

that unconditional love comes from our children

That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.

We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.