Life, 2 hours sleep and a road trip to the new hospital

Let's get this straight. Life is not like a box of chocolates. It is certainly not a bed of roses. It is not even an uphill struggle. It's a bloody joke. A sick joke.

Sometimes I think instead of a god or some 'higher power' there is some messed up joker up there in a batman suit watching us all beetle around our little anthills living out our daily dramas which seem so desperately important but actually mean nothing, and he is laughing and laughing at our misfortune. We dash around like headless chickens and then we die of old age, illness, car crashes, plane crashes, Ebola (massive respect to Bob Geldof, my hero, by the way) or whatever else happens to waddle along to finish us off, and it was all for nothing. 'A tale, told by an idiot, full of sound and fury, signifying.... nothing.'

Apologies to those of you who say I am funny. I would love to make you laugh but I am actually quite depressing at times. I think these thoughts are born of having 2 hours sleep between 4.30 and 6.30 rather than any deeper psychological disturbance, at least I hope so....

I am in a lot of bladder pain at the moment and keep having these spasms where literally I cannot pee even though I really need to, which is scary, as apparently the mast cells have invaded my detrusor muscle (sorry, technical talk; the muscle that you hold in your pee with).... There is some therapy that can help which my consultant is applying for. In the meantime, it is Diazepam all the way. Plus my usual cocktail of painkillers. Although am persisting with the Elmiron . Despite the fact that it makes me feel sick and my hair fall out. The hair loss is manageable and the nausea I am so used to I have forgotten life without it..... I am happy to lose all my hair if my bladder recovers. I took this decision so it doesn't bother me and in fact nobody else but me is noticing as it is not very obvious.

Am now into month 4 of Elmiron and have heard of people who had to take it for over 6 months before anything happened so I hold out hope. One woman told me after 8 months of nothing, she was about to give up when it just magically started to work and she is now almost pain free . As it works in a third of IC sufferers, it is worth persisting, I think. Actually one thing is changing, I am getting up at night less to go to the bathroom. But that could just be because I am awake more; or because I am taking tranquilisers due to the bladder spasm.. But I think it may be different. The night before last I slept for 6 hours straight. This has happened a few times lately, without a sleeping pill. for me is something of a miracle. We shall see. My new consultant said to watch and wait and reassess in February when I may start more invasive treatment.

So I got two hours sleep because of crazy bonkers emotional dramas going on here which I just do not need. Too private to write about even on here, as I just don't know who may read it. Suffice to say that some people are emotional vampires who drain your energy and suck your time and make you feel like you are losing the plot, and they do this regardless of how you are feeling, and I just want ALL of these people GONE. The trouble is, their roots are very deep in my life and it is hard to weed them out. I love several of them. But the dramas are keeping me stuck and keeping me ill. I was having a panic attack at 3am. This is no good for me or the kids. Thank you to those friends who were there for me last night. Sorry if I worried you. I would say it sounded worse than it was but that would be a lie. I honestly don't know what I would have done with you. Caveliere, grazie mille.

I am driving later to the new CLEAN hospital (I just can't get over how clean it is after our local hospital, which resembles the less pleasant hospitals I have encountered in India; the room where they do the catheter treatments is like a private hospital with pictures of soothing moutainsides and waterfalls - waterfalls??! who designs these places??! - and floors which sparkle as if they are cleaned every hour) for a focus group with other people who suffer from chronic bladder disease.

I really hope it is worthwhile as it has been a huge hassle to sort out who is looking after the children. As usual like juggling with sixteen balls and dropping several all the time. As am not on speaking terms with mum still it is even harder. But thank the lord for good friends and neighbours and fellow school mums plus a decent childminder three times a week after school. Who drives! Pre Pubescent Beauty has her first hockey match today (but mummy WHY can't you come? WHY? You are not a mother!!!), Blue Eyed Boy gets out of school at the very time that I have to get on the road and then has a piano lesson to go to in a different part of town from the hockey match.... But I have organised it all and at 3.15 come what may I am leaving for the hour and a bit drive, the two hour group, and then the return journey.

I am nervous about the journey, as have not done it alone so far; always with dad or a friend, and we have always got lost; and am nervous about the group as have met so many people online with IC but not one person in real life in 27 months of illness. What if they don't feel the same way as me? What if they are all really dull and quiet? What if they think I am really weird and loud? What if they are all much much better at coping with it and think I moan too much? Worse still, what if there are only three of us there plus five psychologists and six urology nurses and it is two long hours of custard-cream-eating awkwardness when I would far rather be at home watching Eastenders with a hot water bottle and my cat?

But we have to try. I have to try. I really am. Trying, that is. Best foot forward. Can't you tell?

xxx

Top ten techniques to cope with chronic pain

So I am still here, boys and girls, just posting less frequently.This won't be a rant, I promise!!

I have been getting on with things after a period of a couple of weeks where I could hardly leave my house/bed, I have been more active in the past couple of weeks and some good things have been happening (thank god) as well as the usual shit. So, I am grateful for that.

Some wonderful new people have come into my life online (nb still not doing facebook though my account has mysteriously opened itself again so i may go back to it and delete everyone I don't want to talk to.... and my new instagram name is rainbow_girl_x) .... This has cheered me up a great deal. Real true lasting connections; makes me hate the internet less! I have met one truly amazing person who I will write about more another time soon. And my remaining lovely friends and family who have stuck by me through thick and thin continue to be amazing and constantly surprise me with their kindness and support. You know who you are.

I want to write a post about my hospital visit last week and my amazing new consultant and CLEAN clinic and examination room... and even more amazing friend who came with me and drove me home when I was too exhausted; and a post about the new sparkling folk in my life; and a post about love and letting go and how difficult that whole side of things is..... and a post about my kids and how all their stuff is going....Also I have started working one morning a week at my son's school helping in the classroom plus am writing more and hoping for some articles coming up.... So things are not quite so depressing....

But time is short and I am in some pain so all of that will be another day soon. For now I am going to stick to my plan: Top Ten Techniques to cope with chronic pain.

An IG friend asked me the other day how I cope with being in chronic pain. She too suffers from a really painful chronic autoimmune disease and was having a bad day and she just assked me directly: how do you cope? It made me think. How DO I cope? it has been 2 years, 2 months now, and look at me, here I am, coping ...

So aside from taking painkillers, which is a personal choice and I am not going to even start that debate here, as it's up to you! (If you want to use lavender oil, tramadol, or bloody oramorph, knock yourself out... I don't judge... Your illness, your fight, your choice. Personally I have to be on painkillers/muscle relaxants or I couldn't function or leave the house or look after my children so there is no luxury of choice for me.)

So... these are my top ten recommended techniques on bad pain days. I really hope these help you. Please do leave me comments as I really love it. Let me know what works for you and what doesn't and what I have missed out or maybe things that I could try myself which I haven't thought of yet. So here goes; take note!

1. Divide your day up into periods of necessary activity, self-care and rest. Do the things that you have to do, whether that be caring for yourself/children/animals, looking after your house, cooking, cleaning, working if you're up to it; do some nice things to look after yourself - in my case usually watch an episode of a boxset I am into, or read a few chapters of my book, or listen to a radio program, or have a bubble bath, or go into the garden and breathe some fresh air or maybe even go for a walk if it's a really good day... you will have your own list by now, and if not make one; and then just rest. Lie down in or on your bed and shut your eyes and switch off. Set the alarm and let everything else drift away. I often leave radio 4 on and switch on my electric blanket and just have an hour or two off. Personally I know that I can never manage the school run morning and evening unless I have scheduled in some rest during the day. So if I know I am doing a lot of ferrying the kids around, I know I will need a lot of rest. If I can ferry the kids around less, I may be able to rest less, and do some more nice stuff. I now work one morning a week at my son's school plus am doing a lot more writing now and more stuff with the kids, so I factor the self-care and the rest around that.

2. Don't feel guilty for any of the above. You cannot operate at the speed of a well person and nor should you be expected to do so. Leave the guilt at the door. It is not your friend. If you are having a slow day, a tired day, a painful day; accept that and hope that tomorrow will be better. It helps me to imagine I am caring for a loved one and doing everything I can to help him/her when actually it is me. Because I have always been better at looking after others than myself. That's just how I roll.

3. Don't push yourself further than your edge. It is a good idea to push yourself a little and not just to sit in the pain saying 'poor me, isn't life terrible, I have this incurable disease and I may as well be dead'. I have been there and done that and got the T shirt and it's not much fun. But equally, making yourself act as if you are well when you are not well, and act as if you are not in pain when you are in pain, is just dumb. You will make yourself worse.

4. Let yourself be sad. Don't bottle it up. Share what you are feeling. Remember that you do not stand alone and there are a huge number of us chronic pain warriors out here who are fighting similar battles. Sometimes I write it down or I call the Samaritans (no shame in doing that) or a friend who is not sick of me (make a list of the people you can speak to who will listen without judgement and alternate them, because if you call the same person every night that person will very quickly make sure your call goes straight to voicemail) or I talk online in forums or increasingly on Instagram to fellow chronic pain sufferers. There are some beautiful people out there and people really want to listen and help. It is a little like the principle of AA, I think; people help because it helps them to help. If I listen and support someone, I feel better about myself, which in turn makes it easier for me to deal with my own pain and my own feelings... if that makes sense... I have occasionally been known to talk to total strangers about my illness, which can actually be surprisingly therapeutic as you know/hope you will never see them again (though they are probably thinking 'who is this crazy girl and why the hell is she telling me her life story?'). 
I see my GP every week or fortnight and she is great at listening; and I go regularly to acupuncture, and she also acts as a kind of therapist. I guess I should be in therapy too, but it just seems one thing too many. At the start of this journey, you don't want to talk about it. You want it to be a bad dream and you want to wake up. I know this remains the case for some people, but the people I see doing best are the people who express how they are feeling. As the months have gone on I have got better at not bottling it all up. Sometimes I just have a really good cry. Or I scream into a pillow. Or I talk to myself in the mirror. It doesn't really matter what you do. Just don't let it fester inside of you, poisoning you and making you feel that you are the only one who has ever felt this. Express your feelings around your pain. Listen to others. It really, really does help.

5. Having said all that, don't talk to the wrong people. You know who they are, and if you don't you will soon find out. The naysayers; the people who either don't believe you are ill at all or think that you are exaggerating. They say 'have you tried vitamin B?' and 'my sister had that , and she went to a great reflexologist; let me give you her details'. Or they say 'oh yes, I get really tired too, but I just push through it'. Or in my case, they say 'have you tried cranberry juice?'. No hun, I would like to pour cranberry juice all over your stupid fucking unsympathetic nosey annoying face right now, but thank you anyway for asking..... These people are toxic for us. They are no good. They do not want to help even if they say they do. They are just really glad that chronic illness isn't happening to them and they want to diminish your feelings and put you down in order that they feel better about their 'perfect' lives. Well sod that. Walk away. Give them a piece of your mind on the way if it makes you feel better. Sadly they may be not only acquaintances but friends and members of your family. This is a toughie but we are who we surround ourselves with.

6. Don't be afraid to cancel plans and arrangements. This is a tough one for me, because I used to pride myself on being ultra-reliable, but sometimes the nature of chronic IC and accompanying chronic fatigue is that I just cannot do something that I promised to do. The worst thing is when you have to cancel something that you promised your children. They DO understand and they WILL forgive you always, if they are anything like mine; but that doesn't make the disappointment any easier to deal with. When it is adult friends, it is easier. They are grown ups. If you said you would see a film / have a cup of tea with them / go out somewhere, and you are in too much pain, you just owe them a simple one line explanation. Their reaction is their problem, not yours. My true friends have always understood (even if they get annoyed at times, which is understandable), and the people who haven't understood that I can no longer be Miss Reliable and Miss Life and Soul of the Party are no longer my friends.

7. Distract yourself from your pain. Find ways to put your mind in another place. Acknowledge the fact that you are in pain and then do anything that you can to take your mind off it. For me, books and films / box-sets work best, closely followed by writing and being outside in nature. A long bath with essential oils and a good magazine is pretty great. A supportive friend coming over and just hanging out with you, even if you are curled up on the sofa with a heatpad or hot water bottle, and just talking to you about their stuff and making you laugh a bit; that works. Just take your mind somewhere else.

8. Take it day by day; hour by hour; or if necessary minute by minute. You have to put the blinkers on sometimes and just get through the day. Take the painkillers if that is what you do (and lets face it, most of us do) and just plod on through the time until it is time for bed. There is always tomorrow. We can always hope for a better tomorrow. We do not know what future years will bring either or what advances there will be in medical science. So do not look too far forwards, and awfulise about a future in which you inevitably get worse and die alone surrounded only by fifteen cats and nobody finds your body for weeks; and neither should you look too far back, idealising the time before you got ill. Things weren't perfect then, either, remember? Just keep it in the moment; it helps.

9. Do not put too much faith in the medical profession, whether conventional or alternative practitioners. I have known some great doctors and some not so great doctors and some fucking terrible doctors in the past 27 months of dealing with chronic illness. I have also met some amazing alternative practitioners who sadly have not been able to help much with my IC but are great people nonetheless and have helped with my stress and anxiety levels. But hear this: if you have an incurable chronic disease, you have an incurable chronic disease. Sure, there are treatments, and all doctors and alternative practitioners and therapists want to help you. Some doctors really will be able to help you and may find a treatment that works well for you. But they do not have a magic wand. I remember when I was diagnosed thinking great, that means I will get better now because they know what's wrong. Nope. As my father always says, 'I have known too many lawyers to put my trust in doctors'. Remember that they have hundreds and thousands of patients and you are just one of them. However much they want to help you, you have to be your own advocate first and foremost. Don't be passive about your pain. If you need help, ask for it. I have gone to my doctor begging for strong pain relief just to tide me over and she has given it to me and I think that was the right thing to do, on both our parts. And yes I have tried Vitamin B.

10. This is the best, so I saved it for last. Find your reason for going on. On days when the pain is really, really bad, and you just want to curl up into a little ball and never emerge into the world again, why do you bother? My reason for going on is my children, first and foremost; and also a little tiny glimmer of hope inside of me, a little bit of the old me, who is whispering 'things may get better, so don't give up. That man you're looking for, he may be around the corner. That book  you're writing, it may get published. That medicine you're taking, it might just work'......
Find your own reason. Some people have a dog or cat whom they live for; that animal gives them a reason for going forwards and the love they share really does propel them forwards (my cat is lovely but she is not my reason for going on; she knows how to take care of herself, though she does give good cuddles when she wants to). Some people have a job that they still manage to do part-time, or even full-time; a vocation that their illness may have made difficult but not impossible.
My children and my wish to continue writing, living, meeting new people, forging new relationships... these things root me in the world and mean that even when the pain is unbearable, I will not go gently into the night. I will rage, rage, rage against the dying of my light.