1. Your health is the most important thing you have. Never take it for granted.
2. When illness strikes (and I am talking about for more than a couple of weeks) you really know who your friends are. And your family.
3. Appreciate every minute you get to spend with your children - even the shouty, grumpy ones. You never know what is around the corner. It could be you, it could be them. Life, health and happiness are not assured. Hug your children and tell them you love them every single day.
4. Even if you eat the healthiest diet, do lots of exercise and go for
regular de-stressing activities like massage, it won't stop something
from happening to you out of the blue. Go figure.
5. Making a superhuman effort to get on with things is actually better than "resting". Resting gives you too much time to think.
6. The problem with 5) is that everyone, including your initially concerned friends, will assume you feel better because you are not moaning on about your problems any more,
7. This only leads to more feelings of isolation.
8. Doctors are not God. Even the one you are married to. They cannot fix everything with a pill. The drugs don't always work, and sometimes cause more problems.
9. Even the strongest marriage can be put under strain by chronic ill
health. It is impossible for one partner to really understand what the
other is going through (especially when you don't have a diagnosis). And there is pressure on both of you.
10. It is irritating when everyone tells you that you are brave and "I don't know how you manage". The fact is, you have to. You just have to deal with it.
11. Everyone knows a new chiropractor, physiotherapist, acupuncturist, dietician or some other guru whom you absolutely HAVE to see. You know they are trying to be helpful, but at a certain point you just don't need any more suggestions Also, some people will almost act offended if you don't try their person - as if you aren't helping yourself. This makes you feel guilty.
12. Empathy is what you need most. Not sympathy as such, but empathy. Like when your neighbour comes up and tells you she has been going through terrible insomnia due to toothache, and now she understands how much you must be going through after four months of this. You appreciate those moments.
Years ago, after months of uncertainty, Husband applying for job after job, all unsuccessful (and this is how we ended up in America), a friend's husband applied for a job and didn't get it. She said to me "I am so full of admiration for how you've been coping over the past few months. This has devastated us, and you've been through it over and over."
That meant a lot to me.
On the other hand, I always feel a bit defensive when someone starts a sentence with "I know just how you feel". Feels kind of presumptuous.
I'm glad you're writing about this. I hope it's helping a bit. As much compassion as many of us have, it's hard for someone who's not experiencing it (or has never experienced it) to really understand. I haven't experienced anything like you are going through, but the 6 months of nearly-constant pain I had from my back injury (and occasional 'low' days even now) gave me a good insight into the effects of chronic pain and the fear, depression and uncertainty that can go along with it. I do think people really want to be helpful, and we really do live in a time and place where there seems to be a 'fix' for everything. If you haven't experienced it yourself, it's hard to understand that modern medicine can't always fix it. I don't think people mean it that way, but it does make you - as the person who's ill - feel as if they think there's an obvious answer out there that you just aren't bothering to find. After all, this magical potion/diet/exercise regime/detox/whatever worked for them or their friend/sister/father. It's not the same,but when my dad was diagnosed with lung cancer many years ago, we were inundated with people telling us that if we just tried this diet/this regime/visited a dr. in Mexico/Germany/India, he'd be magically healed. It got very difficult to continue to hear these 'helpful' suggestions when we'd already tried so much and seen so many drs (and were satisfied that we had tried all that modern and alternative medicine had to offer -within our comfort zone- and that there was nothing more to be done.) I'm sure there are days when you want to just scream at the 'helpful' suggest-ers. Keep posting, keep sharing, keep educating people- we will listen and learn. Love those little boys, and be gentle with yourself. Hoping and praying for good things for you x
I haven't been much of a blogger over the last few months, first time I've been over to see you and had no idea what was going on with you.
I agree with all of these, especially 3, 11 and 12. Yes those ones in particular.
This sounds like Lyme disease to me.
I could comment on each of your points, but I won't. You will find a way through this but it's going to take a while. I think when you're back in England and among your true support network, you will find more strength and won't be questioning yourself as to how you're "supposed" to be reacting to your situation.
Just focus on your health and not on your guilt or "best practice" approach. xx
Sorry to have been one of the suggesters in the last post comments, and a particularly way out wacky one at that! I guess it's human nature to want to be able to fix things, but really we should just listen, empathize if we can, and otherwise shut up! I'm listening.
Well done with that list - so, so true. And regarding moving home and assuming it's all going to be better there - I am an expat too, and in either the USA or the UK it's all the same old. The 'support network' still doesn't get it. I'm really fortunate that for my blood disease (LCH) we have an amazing online support group on Facebook - the benefit of finally getting an answer / diagnosis.
That is a really interesting point about whether being back in the UK will provide more of a support structure. I think it will. That saying about old friends being gold, and having family around - I think this will be tremendously helpful. (but it also sounds like you've made wonderful friends in the States - do you feel the friendships are deep enough now to talk without having to put on a brave face (which is a pressure in itself)? But, tho your move is getting closer, it's still a little way off and I truly think you'll be feeling better WELL before then. And, as you say, a diagnosis will be the turning point, because then you'll know what you're up against and what you can do about it. This WILL pass - you won't always feel like this, even if it's hard to imagine. There are a LOT of people really worrying about you. Much love xxxxxx
Iota - I agree, they don't know how you feel. But if they can begin to empathise it's a start.
MsCaroline - I can totally see how that must have been so frustrating with your father. It is actually so exhausting trying all these different things. At some point you have to stop.
Pants - thank you. Hope to see you again in England, hopefully feeling better by then.
Anonymous - yes, it does, doesn't it? But it isn't - I've been tested twice.
Expat Mum - I do hope you're right. But I honestly don't feel I really do have a stronger support network in the UK. I don't have a mum, and although my Dad is great, my sister lives outside of London and my friends are dotted around the place. Here, it is nice that everyone is in one small area.
Kit _ I wasn't talking about you, promise! More about people here, especially those who don't know me well.
Kirsty - I think you're probably right. I don't think there will be much of a difference.
Circles/M - see above. I think for you, it would be better, but for me, the family is so fragmented anyway, and so many of my friends have moved out of London now. But, we will see. x
Ps, wondering also if the thought of the move is making you feel worse? It must feel very daunting. Make sure to ask for as much help as you need. As I said, you're such a well-loved person A - we're all rooting for you. Xxxxx
You hit the nail on the head for me with so many of those points, especially 1, 4 and 10. I am VERY glad I bought life insurance several years ago as I would be considered uninsurable nowadays, despite the fact that I am basically pretty healthy. Well, except for the 3 brain tumors. (No, I'm not kidding!)
I read somewhere else about the importance of empathy, rather than sympathy...I wish I could, but I've always been lucky so don't really know how it is for you...thinking of you lots
Well said - the thing is that unless they have been there, people rarely even try to understand - my particular favourite is people telling me how hard it is not falling pregnant until like your 2nd month of trying... um try that for the better part of 5 years...
Hope that the hospital trip comes up with some answers and some ways to get you better
Life sucks doesn't it?
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