What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers. What methods of awareness can you use to show the public this is real?
In this blog, I explore many of the issues surrounding IC in the context of my own life as a single mum of 2 in the U.K. Its readership is growing. I am receiving positive feedback from IC sufferers who are so thankful I am putting into words the things they feel. This is real way of raising awareness of the realities of living with this disease. On the back of this, it's possible I'll have an article in the national press over here fairly soon.
I have also started to talk to people more about my condition. If people ask how I am, sometimes I don't just say 'getting there' or 'not too bad', but I stop and tell them a bit. Sometimes they don't want to know, which is fine. But sometimes - more often than I would have predicted - they do. People listen, and can't believe it - 'you mean, you have cystitis all the time? No way! That can't be possible'. And then they listen some more, and take it in, and go away and process it. For every one person who does this, awareness spreads.
I have connected with an IC sufferer not too far from where I live and am hoping to help set up a local monthly support group in addition to the online support I've found at IC-Network and the COB. I might ask at the hospital if i can put up a card asking who is suffering with similar symptoms. This card in itself would be read by hundreds of people coming in and out for appointments.
So I plan to do what I can, within the sphere I'm living and with the low energy level I have. If we all do a little, a lot will get done in terms of showing the public that Interstitial Cystitis is really affecting tens of thousands of people worldwide - if not more.
Much, much more money needs to go into research in my opinion. It's not enough for doctors to throw up their hands and say 'we don't know'. It just is not good enough. It's not enough for other people to think we are exaggerating or it is in our heads or it simply can't be possible. It is possible. It's happening to us; we're living with it.
In terms of medication, we need to know what aside from Elmiron (which as yet I have not even been allowed to take!) and nerve blockers/antihistamines (which do not work for me) might substantially help us. I have realised that I, for one, cannot spent the next decades of my life on opiate painkillers. I'm only 35. I'm not standing for it. More research into alternative therapies and supplements could reap huge benefits for many of us; the small studies into Aloe Vera and Cystoprotek are so promising and such a ray of hope... but the big drug companies are not funding them so they remain too small to be definitive. They need repeating on a much larger scale. For this, we need public awareness and sponsorship. We need this disease to be common knowledge, like arthritis, fybromyalgia, ME or other chronic pain conditions.
So we cannot stop pushing and fighting for our brighter future, however dark things seem when the pain is unbearable and you're on the toilet every fifteen minutes and so exhausted from it all you feel like giving up. Even if there is no 'cure', there are no doubt a number of remedies that as yet remain unexplored and thus unused. And in the end, perhaps, a 'cure' will be found, and some of that will be thanks to each of us fighting this good fight. We are not fighting just for ourselves, but for each other.
About Me
- rainbowgirl
- This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.
Monday, 30 September 2013
with or without you
I got really upset yesterday at the thought that my dear old Grandpa, whom I am very close to and have cared for a great deal in the 5 years since my Granny (and best friend) died, might eventually have to move to a home, and not in the city I live in. That I might not be able to see him whenever I/he want/s. That we might be separated. I burst into tears. And then I thought - he's 93. It's not as if he is going to be here in ten years time anyway. Or even five. Who knows?
Suddenly that thought was so untenable to me; so utterly dreadful. I feel as if I have lost enough people who I really care about; I cannot lose another. The people who are close to me are so precious to me I just want to superglue them to the spot, to 'keep' them, to know for sure that they are not going anywhere.
And yet that is not how life works; not my life, and not anybody's life. Everything is in a state of flux and change is the law of the universe. We all grow old; we all go through phases and metamorphose into different people, though we remain the same in essence. We outgrow each other. We 'dump' each other. We move away. We die.
The man I love is far away from me; he is on the other side of the country. My family hate him because of the way he acted years ago, because he lied, because he stole, because he hurt me. Also he is someone so out of their sphere that they cannot understand what makes him tick and the very idea of him being my soulmate hurts or would hurt them (some of them know; some can't stand to know). The fact that he has learnt and grown and changed doesn't come into it for them, though for me it counts for a lot. We cannot be together for now and yet there he is, solid, supporting me, from afar.
Some people say it is easy to do that, but I disagree. It's not easy to be there for someone, up close or far away. It is really difficult to listen; it's not easy to be bothered. How often do you really take the time to hear somebody else? It's much easier to forget, to say 'I'll call you back'; to postpone and prioritise something or someone else. But I never get that from him. And I can only conclude it's because of genuine old-fashioned love. I do the same for him and however things turn out, will probably do so all my life. Who knows what the future holds for us? I cannot hold onto him; it's like sinking in quicksand or holding a ladder up to the stars. I can only let it be what it is.
As with all of my relationships: in the end, we are born alone and we die alone. And with or without any of you, my life will play out, and will go through its phases, and one day I will stop breathing.
It's good to think about these things once in a while. Everything can seem so permanent, and yet nothing is. Nothing lasts. Except love, which does; though sometimes that just causes more pain.
But love is what saves us. It is, in my view, the only force in this universe stronger than death. Love is what pulls us through when we do not want to carry on; love is what gets us out of bed in the morning and encourages us to put one foot in front of another. The immediate love for and from my children keeps me going through the days. Otherwise I would probably have given up the daily and hourly fight by now.
So love - or Love, for it merits a capital letter, being as important as God, whatever you take that to mean - is permanent, but we cannot hold onto it. It's like trapping a butterfly in a glass box to look at its beauty: that's the best way to kill it.
Suddenly that thought was so untenable to me; so utterly dreadful. I feel as if I have lost enough people who I really care about; I cannot lose another. The people who are close to me are so precious to me I just want to superglue them to the spot, to 'keep' them, to know for sure that they are not going anywhere.
And yet that is not how life works; not my life, and not anybody's life. Everything is in a state of flux and change is the law of the universe. We all grow old; we all go through phases and metamorphose into different people, though we remain the same in essence. We outgrow each other. We 'dump' each other. We move away. We die.
The man I love is far away from me; he is on the other side of the country. My family hate him because of the way he acted years ago, because he lied, because he stole, because he hurt me. Also he is someone so out of their sphere that they cannot understand what makes him tick and the very idea of him being my soulmate hurts or would hurt them (some of them know; some can't stand to know). The fact that he has learnt and grown and changed doesn't come into it for them, though for me it counts for a lot. We cannot be together for now and yet there he is, solid, supporting me, from afar.
Some people say it is easy to do that, but I disagree. It's not easy to be there for someone, up close or far away. It is really difficult to listen; it's not easy to be bothered. How often do you really take the time to hear somebody else? It's much easier to forget, to say 'I'll call you back'; to postpone and prioritise something or someone else. But I never get that from him. And I can only conclude it's because of genuine old-fashioned love. I do the same for him and however things turn out, will probably do so all my life. Who knows what the future holds for us? I cannot hold onto him; it's like sinking in quicksand or holding a ladder up to the stars. I can only let it be what it is.
As with all of my relationships: in the end, we are born alone and we die alone. And with or without any of you, my life will play out, and will go through its phases, and one day I will stop breathing.
It's good to think about these things once in a while. Everything can seem so permanent, and yet nothing is. Nothing lasts. Except love, which does; though sometimes that just causes more pain.
But love is what saves us. It is, in my view, the only force in this universe stronger than death. Love is what pulls us through when we do not want to carry on; love is what gets us out of bed in the morning and encourages us to put one foot in front of another. The immediate love for and from my children keeps me going through the days. Otherwise I would probably have given up the daily and hourly fight by now.
So love - or Love, for it merits a capital letter, being as important as God, whatever you take that to mean - is permanent, but we cannot hold onto it. It's like trapping a butterfly in a glass box to look at its beauty: that's the best way to kill it.
Sunday, 29 September 2013
how did my Interstitial Cystitis begin?..day 29
How did your IC begin? Did it come on suddenly or gradually? Do you know what caused it?
My IC came suddenly one November evening last year. Sudden pain one evening when going to the loo before bed. Then increasing symptoms over a few days, but it was a couple of weeks before the GP would take it seriously and even start me on any (useless) antibiotics.
Up until then my bladder had been completely normal, for years. A decade previously I'd had a small polyp removed which had been causing bacterial infections, and eventually a kidney infection; but for years and years I had only suffered the occasional UTI, usually related to sex and easily treated with a course of antibiotics.
So I was not particularly worried at first; more frustrated. Not another health issue, I thought. For two previous months I had been severely ill with stomach and bowel problems, a combination of severe gastritis (inflammation, interestingly, of the lining of the stomach) and severe cryptosporidium (a nasty parasite caught from the nasty canal water of my nasty ex partner's nasty boat
). I was dangerously underweight. I assumed this UTI would just go away and was obviously due to some bacteria from recent diareahha.
And maybe that's what had happened, at first. I'd just had the second of two full-on CT scans as I'd lost so much weight people were scared I had cancer as I had a 'shadow' round the stomach area which turned out to be 'nothing' after all; and the second CT scan had involved drinking a large amount of dye fluid which had given me a bad upset stomach. Sure enough, ecoli did come back on the first test, though not the dipstick only the culture; a couple more were indeterminate -mixed culture. Then they were all clear, and have remained clear. The dipstick tests were always clear, which I find odd bearing in mind the state of my bladder.
And so the nightmare began. For weeks, months, I was convinced it was only a case of finding the 'right' antibiotic. Then I was convinced it was ureaplasma, mycoplasma, chlamydia... it was none of these things. No bacteria. I had to come to terms, with great difficulty, after the cystoscopy and biopsy, with the (semi?) permanent nature of this disease. It's been almost a year now. What a journey. I would not wish this on my worst enemy. It's easily the most difficult thing I've lived through; and I've lived through a lot. And yet it is teaching me so much, in such a stark way, about what and who is/isn't important in my life now.
Did I get IC from bacteria? Perhaps initially. Did I get IC from being run down? Yes, my immune system was fucked. Did I get IC because I was furious with my ex? Who knows. Did I get IC because of a generalised inflammation of my internal organs? This is what I most believe.
So now I'm really going for the anti-inflamatory approach; in all areas of my life. A lovely lady on the IC network pointed out to me the difference betweeen anger and bitterness. I am not bitter; I refuse to be. IC will not break my spirit; I will not let it. I will fight for my moments of joy and for the life I've created; but my God, do we have to fight hard.
My IC came suddenly one November evening last year. Sudden pain one evening when going to the loo before bed. Then increasing symptoms over a few days, but it was a couple of weeks before the GP would take it seriously and even start me on any (useless) antibiotics.
Up until then my bladder had been completely normal, for years. A decade previously I'd had a small polyp removed which had been causing bacterial infections, and eventually a kidney infection; but for years and years I had only suffered the occasional UTI, usually related to sex and easily treated with a course of antibiotics.
So I was not particularly worried at first; more frustrated. Not another health issue, I thought. For two previous months I had been severely ill with stomach and bowel problems, a combination of severe gastritis (inflammation, interestingly, of the lining of the stomach) and severe cryptosporidium (a nasty parasite caught from the nasty canal water of my nasty ex partner's nasty boat
). I was dangerously underweight. I assumed this UTI would just go away and was obviously due to some bacteria from recent diareahha. And maybe that's what had happened, at first. I'd just had the second of two full-on CT scans as I'd lost so much weight people were scared I had cancer as I had a 'shadow' round the stomach area which turned out to be 'nothing' after all; and the second CT scan had involved drinking a large amount of dye fluid which had given me a bad upset stomach. Sure enough, ecoli did come back on the first test, though not the dipstick only the culture; a couple more were indeterminate -mixed culture. Then they were all clear, and have remained clear. The dipstick tests were always clear, which I find odd bearing in mind the state of my bladder.
And so the nightmare began. For weeks, months, I was convinced it was only a case of finding the 'right' antibiotic. Then I was convinced it was ureaplasma, mycoplasma, chlamydia... it was none of these things. No bacteria. I had to come to terms, with great difficulty, after the cystoscopy and biopsy, with the (semi?) permanent nature of this disease. It's been almost a year now. What a journey. I would not wish this on my worst enemy. It's easily the most difficult thing I've lived through; and I've lived through a lot. And yet it is teaching me so much, in such a stark way, about what and who is/isn't important in my life now.
Did I get IC from bacteria? Perhaps initially. Did I get IC from being run down? Yes, my immune system was fucked. Did I get IC because I was furious with my ex? Who knows. Did I get IC because of a generalised inflammation of my internal organs? This is what I most believe.
So now I'm really going for the anti-inflamatory approach; in all areas of my life. A lovely lady on the IC network pointed out to me the difference betweeen anger and bitterness. I am not bitter; I refuse to be. IC will not break my spirit; I will not let it. I will fight for my moments of joy and for the life I've created; but my God, do we have to fight hard.
Saturday, 28 September 2013
lying here thinking...
... about the people in my life who have stuck by me, and the people who have returned, and the people who have disappeared, slowly or suddenly, and the people who have run fast in the other direction from me.
I never could have predicted who would do what.
I don't feel sad for the people I have lost, really; though I will miss them, I expect, in the fullness of time. But there's no point in sticking around nominally and I don't take betrayal lightly. Either you want to be with me, or not. I'm not perfect - who the hell is - and if somebody spends their time criticising you and pointing out your faults when you are ill, then really they're not worth knowing. In fact, they're a toxic bitch and you're much, much better off without them. So goodbye, Toxic Friend. And my friendships which have lapsed... well, come back if you want, but don't expect it to be quite the same. I've learnt that fair weather friends aren't really friends at all.
If somebody is in a relationship with you for a year when the going is good, then leaves you when you've just got out of hospital and are seriously ill, you can safely conclude they are a. a total wanker, and b. not somebody who loved or respected you much in the first place. Mr Sleezeball, I firmly add you to my list of people I most regret sleeping with. In fact, you're at the top of the list.
My few close friends who have been with me through thick and thin this year I will love forever and will never forget their kindness. And you know who you are. Some of them I've seen regularly - as they're local; others are far away (and yes, London is far!) but I don't begrudge them that if they've kept in touch and I've known they still care. One amazing friend sent me letters and postcards through the winter which really kept me going. Some are ill themselves or have had many other things going on and so long as I know we're still connected, it's ok.
One of my loveliest friends emigrated to Australia 2 years ago and has since had a baby and got herself a new husband (not in that order, but you know what I mean). It only took an hour sitting on a bench with her when she visited for a day to realise that I hadn't lost her at all, even though I never see her and months and months go by without us talking. Roll on the days when I am well enough to visit Byron Bay! Likewise another very close friend is currently living in the States. I need to email her as I hope to visit her next year with Pre Pubescent Beauty, who is her goddaughter. I miss her a lot, but I know as soon as I see her we will just pick up where we left off; we always do.
And last but not least, my Heathcliff, my soulmate, whom I wish I could be with but at least know is out there and loves me. He has been like a rock for me since we got back in touch, particularly at midnight when I'm sobbing about how much pain I'm in and there is nobody who wants or cares to listen. He is my past; he is here, back, incredibly, in my present; I hope if he sorts out his shit he might stick around for my future too.
I never could have predicted who would do what.
I don't feel sad for the people I have lost, really; though I will miss them, I expect, in the fullness of time. But there's no point in sticking around nominally and I don't take betrayal lightly. Either you want to be with me, or not. I'm not perfect - who the hell is - and if somebody spends their time criticising you and pointing out your faults when you are ill, then really they're not worth knowing. In fact, they're a toxic bitch and you're much, much better off without them. So goodbye, Toxic Friend. And my friendships which have lapsed... well, come back if you want, but don't expect it to be quite the same. I've learnt that fair weather friends aren't really friends at all.
If somebody is in a relationship with you for a year when the going is good, then leaves you when you've just got out of hospital and are seriously ill, you can safely conclude they are a. a total wanker, and b. not somebody who loved or respected you much in the first place. Mr Sleezeball, I firmly add you to my list of people I most regret sleeping with. In fact, you're at the top of the list.
My few close friends who have been with me through thick and thin this year I will love forever and will never forget their kindness. And you know who you are. Some of them I've seen regularly - as they're local; others are far away (and yes, London is far!) but I don't begrudge them that if they've kept in touch and I've known they still care. One amazing friend sent me letters and postcards through the winter which really kept me going. Some are ill themselves or have had many other things going on and so long as I know we're still connected, it's ok.
One of my loveliest friends emigrated to Australia 2 years ago and has since had a baby and got herself a new husband (not in that order, but you know what I mean). It only took an hour sitting on a bench with her when she visited for a day to realise that I hadn't lost her at all, even though I never see her and months and months go by without us talking. Roll on the days when I am well enough to visit Byron Bay! Likewise another very close friend is currently living in the States. I need to email her as I hope to visit her next year with Pre Pubescent Beauty, who is her goddaughter. I miss her a lot, but I know as soon as I see her we will just pick up where we left off; we always do.
And last but not least, my Heathcliff, my soulmate, whom I wish I could be with but at least know is out there and loves me. He has been like a rock for me since we got back in touch, particularly at midnight when I'm sobbing about how much pain I'm in and there is nobody who wants or cares to listen. He is my past; he is here, back, incredibly, in my present; I hope if he sorts out his shit he might stick around for my future too.
alone at last... and thank you
So it's Saturday morning, and for the first time in months and months my family are going to have the children all day. I am in bed, with a copy of the Guardian, my laptop, my P.D. James book, and a cup of Roibush tea. I can relax. I can have a long, hot bath. I can call my errant soulmate and catch up with his news and hear his voice. I can watch a film. I can go back to sleep.
They are going to their swimming lessons with my Mum, for which I am very grateful, and then my beautiful little sister and her boyfriend are taking them out this afternoon - they live in London so we don't see them as much as we'd like, the children love their auntie and her fella (who taught my daughter how to 'cook' a crisp packet - don't ask me why but this won her over) and are conseqently very excited about today.
The past couple of hours were really hard work, getting them dressed and doing breakfast and getting all their gear ready while containing excitement levels and fractious behaviour. I sometimes think they're not kids at all, but baby tigers. Shouting, scratching, hugging, jumping up and down... But as my dear Granny used to say, 'we don't want our children to be Potatoes, do we?'. Definitely not. And life seemed more 'normal' this morning, if I can even remember what that was for us before my IC. It does, when I don't feel too bad (that'll be the Tramadol working, and possibly the Acupuncture), and when I don't feel so alone (that'll be the family helping me out today).
I have spent the past week on here battling with some malware/virus which is now clear. It has driven me mad and at times I've thought about giving up on the whole thing. It was due to downloading a random picture; so no more pictures here for now. And I'm not giving up - this is my space - this is my Room of my Own.
I've had some really lovely comments both on the content of my blog and the style and fabric of my writing. As I was saying to one of my best friends, who is an editor so certainly knows bad writing from good, I really didn't know if I could write anymore when I started this thing. I have always identified as a writer, and have always written - essays, articles, stories, poems. But since the birth of Blue Eyed Boy 6 years ago, it's been hard to find the time or energy.
I started this blog in desperation as I just needed to get some of my feelings out. The need was eating me up; and one day someone suggested a blog. I've never liked the idea before, but somehow this was the right time.
It's better than a diary, as it reaches others and helps me feel less alone. As it is anonymous, and not 'for' any formal purpose except my own catharsis and helping others with IC or who are struggling as single mums, I feel no pressure to write in any particular style and consequently no block to the words flowing. People who know me say it sounds like me talking. So there we have it.
Thank you, everyone who is reading consistently and re-posting on your social media. Would love to get my readership up to reach more people out there who say that I maange to verbalise the things they are feeling about chronic illness/ single parenthood / general angst and pain of life. Anything you can do to spread the word is much appreciated. This blog is my heart and soul right now. It's a lifeline. It means a lot to me, as I realised when I thought I was losing it to some stupid computer fuck up. I do not want it to disappear, but to grow.
Just like I do not want to fade away into this world of illness and despair, but want to grow through it and emerge a stronger, wiser woman. Sometimes that feels impossible. Other times, like today, I have glimpses of that happening.
They are going to their swimming lessons with my Mum, for which I am very grateful, and then my beautiful little sister and her boyfriend are taking them out this afternoon - they live in London so we don't see them as much as we'd like, the children love their auntie and her fella (who taught my daughter how to 'cook' a crisp packet - don't ask me why but this won her over) and are conseqently very excited about today.
The past couple of hours were really hard work, getting them dressed and doing breakfast and getting all their gear ready while containing excitement levels and fractious behaviour. I sometimes think they're not kids at all, but baby tigers. Shouting, scratching, hugging, jumping up and down... But as my dear Granny used to say, 'we don't want our children to be Potatoes, do we?'. Definitely not. And life seemed more 'normal' this morning, if I can even remember what that was for us before my IC. It does, when I don't feel too bad (that'll be the Tramadol working, and possibly the Acupuncture), and when I don't feel so alone (that'll be the family helping me out today).
I have spent the past week on here battling with some malware/virus which is now clear. It has driven me mad and at times I've thought about giving up on the whole thing. It was due to downloading a random picture; so no more pictures here for now. And I'm not giving up - this is my space - this is my Room of my Own.
I've had some really lovely comments both on the content of my blog and the style and fabric of my writing. As I was saying to one of my best friends, who is an editor so certainly knows bad writing from good, I really didn't know if I could write anymore when I started this thing. I have always identified as a writer, and have always written - essays, articles, stories, poems. But since the birth of Blue Eyed Boy 6 years ago, it's been hard to find the time or energy.
I started this blog in desperation as I just needed to get some of my feelings out. The need was eating me up; and one day someone suggested a blog. I've never liked the idea before, but somehow this was the right time.
It's better than a diary, as it reaches others and helps me feel less alone. As it is anonymous, and not 'for' any formal purpose except my own catharsis and helping others with IC or who are struggling as single mums, I feel no pressure to write in any particular style and consequently no block to the words flowing. People who know me say it sounds like me talking. So there we have it.
Thank you, everyone who is reading consistently and re-posting on your social media. Would love to get my readership up to reach more people out there who say that I maange to verbalise the things they are feeling about chronic illness/ single parenthood / general angst and pain of life. Anything you can do to spread the word is much appreciated. This blog is my heart and soul right now. It's a lifeline. It means a lot to me, as I realised when I thought I was losing it to some stupid computer fuck up. I do not want it to disappear, but to grow.
Just like I do not want to fade away into this world of illness and despair, but want to grow through it and emerge a stronger, wiser woman. Sometimes that feels impossible. Other times, like today, I have glimpses of that happening.
Treatments and medicines:IC awareness day28
So I had many antibiotics before diagnosis. I think the initial ones cleared an initial ecoli UTI infection; the rest merely caused immune system to weaken further and generally fucked up my system. Then I had a rigid cystoscopy with hydrodistension. This did nothing to help my symptoms - they worsened while I was healing from it, then were the same as before. But it was diagnostic as mast cells and chronic inflammation found and so IC diagnosed definitively instead of 'urethral syndrome' or 'it's in your head' etc....
Since then I have tried:
Conventional medicine: 1. Nortriptyline (which worked a bit initially, but then stopped affecting my bladder just making me sluggish and gain weight and everything dried out... so tried doubling it but the side effects just doubled, so stopped... 2. Hydroxyzine - I thought this had an effect at the beginning but then again stopped working at all and just made me so sleepy and also caused retention. 3. PAINKILLERS - without which I couldn't function - I've tried. I'm currently on Tramadol and Dihydrocodeine, which work out ok if I take Tramadol in the day and DH in the evening. Sometimes I use co-codamol when pain is less, or supplement the strong ones with paracetemol. My pain is a 5 out of 10 to an 8 out of 10 ON these. Without them, I can barely move. I still have days of intense pain even on this medication. I have also tried Fentanyl and Buphrenorphine patches. Both avoided the morning agony but both had side effects and the Fentanyl kept slipping off - but I was in much less pain- may go back on one of these soon. 4. Diazepam - for my Pelvic Floor Dysfunction - my muscles are so tight that it's hard to relax to urinate, so the diazepam helps with this. It also helps me feel less panicky and desperate. 5. Have put in special application for Elmiron through my urology consultant - STILL waiting to hear.
Alternative medicine: Reflexology / aromatherapy - lovely , but ain't gonna cure my IC. Currently having acupuncture, the jury is out on this one. I have had a few more good days lately so you never know, it may be doing something. Need 6 to 8 sessions before can know.
Diet: no caffeine (at all), no alcohol (at all), and much less sugar or gluten. Mostly following the IC diet though I do what works for me. Absolutely no citrus or spice. Artificial sweeteners make me in bad pain. Sparkling water is fine for me tho, as is vanilla ice cream. People do all kinds of things with diet - I don't think we should judge or be prescriptive - but there is no doubt coffee, wine and tomatoes are doing you no favours.
Lifestyle: I'm a busy single mum BUT i spent more time resting now. I mean, lying still and either reading, or thinking, or staring into space. I have lots of hot baths. I use heat patches and cold packs. I adapt. I expect less of others and myself. I try to make this as easy on the kids as possible, which isn't easy at all. I TRY to think positive, which some days is a lot easier than others, but if anyone tries to tell me I can 'affirm' my way to health, I think I will throw Louise Hay's book at them. My acupuncturist says there is a definitive link between IC and anger. This is interesting. I certainly am angry with my ex, as he was responsible for making me ill in the first place which then led to my IC. Dropping this anger is v hard. She says I won't get better til I do. This then makes me angry with her lol :) xxx
Supplements: Probiotics. Have tried some aloe vera, tho it wasn't pure enough, so want to order the Desert Harvest one but currently broke. Would be interested in Cystoprotek as haven't yet tried. Eat more Omega 3 and 6 and I take vitamins sometimes.
Do whatever works for you. Be your own best friend and your own advocate. Nobody will fight this battle for you.
Since then I have tried:
Conventional medicine: 1. Nortriptyline (which worked a bit initially, but then stopped affecting my bladder just making me sluggish and gain weight and everything dried out... so tried doubling it but the side effects just doubled, so stopped... 2. Hydroxyzine - I thought this had an effect at the beginning but then again stopped working at all and just made me so sleepy and also caused retention. 3. PAINKILLERS - without which I couldn't function - I've tried. I'm currently on Tramadol and Dihydrocodeine, which work out ok if I take Tramadol in the day and DH in the evening. Sometimes I use co-codamol when pain is less, or supplement the strong ones with paracetemol. My pain is a 5 out of 10 to an 8 out of 10 ON these. Without them, I can barely move. I still have days of intense pain even on this medication. I have also tried Fentanyl and Buphrenorphine patches. Both avoided the morning agony but both had side effects and the Fentanyl kept slipping off - but I was in much less pain- may go back on one of these soon. 4. Diazepam - for my Pelvic Floor Dysfunction - my muscles are so tight that it's hard to relax to urinate, so the diazepam helps with this. It also helps me feel less panicky and desperate. 5. Have put in special application for Elmiron through my urology consultant - STILL waiting to hear.
Alternative medicine: Reflexology / aromatherapy - lovely , but ain't gonna cure my IC. Currently having acupuncture, the jury is out on this one. I have had a few more good days lately so you never know, it may be doing something. Need 6 to 8 sessions before can know.
Diet: no caffeine (at all), no alcohol (at all), and much less sugar or gluten. Mostly following the IC diet though I do what works for me. Absolutely no citrus or spice. Artificial sweeteners make me in bad pain. Sparkling water is fine for me tho, as is vanilla ice cream. People do all kinds of things with diet - I don't think we should judge or be prescriptive - but there is no doubt coffee, wine and tomatoes are doing you no favours.
Lifestyle: I'm a busy single mum BUT i spent more time resting now. I mean, lying still and either reading, or thinking, or staring into space. I have lots of hot baths. I use heat patches and cold packs. I adapt. I expect less of others and myself. I try to make this as easy on the kids as possible, which isn't easy at all. I TRY to think positive, which some days is a lot easier than others, but if anyone tries to tell me I can 'affirm' my way to health, I think I will throw Louise Hay's book at them. My acupuncturist says there is a definitive link between IC and anger. This is interesting. I certainly am angry with my ex, as he was responsible for making me ill in the first place which then led to my IC. Dropping this anger is v hard. She says I won't get better til I do. This then makes me angry with her lol :) xxx
Supplements: Probiotics. Have tried some aloe vera, tho it wasn't pure enough, so want to order the Desert Harvest one but currently broke. Would be interested in Cystoprotek as haven't yet tried. Eat more Omega 3 and 6 and I take vitamins sometimes.
Do whatever works for you. Be your own best friend and your own advocate. Nobody will fight this battle for you.
Wednesday, 25 September 2013
IC awareness day 25:what IC has not changed about me
What are some things about you that the IC hasn't changed? We often talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn't taken away?
I'm still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. If I care, I really care. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don't know how to be false or silly or bitchy for the sake of it. I don't beat about the bush and I still can't stand pretentious people or game players.
I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn't scream from the rooftops or dance in the streets.
I'm still a good mum - although restricted physically in some ways, in others the IC has made me even stronger - as I'm more conscious of how lucky I am to be blessed with my two children and how big a job I'm doing on my own. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured... That much has not changed. The three of us are a tight family - even tighter than a year ago, I would say. I still love going to the park with them, even if i'm sitting on a bench for most of it, cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. IC cannot and will not take the family I've created away from me.
I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I still love the autumn leaves and the crisp night sky in the countryside when you can see thousands of ancient stars.
I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it's serious enough to warrant that.
I still follow my heart. Whatever knocks and blows I receive I retain a kind of internal innocence, which is maybe weaker now but not dead: I still believe in love, and fairies, and mermaids.
I may not believe in wishes coming true so much anymore but you never know, that could always change if mine does.
I'm still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. If I care, I really care. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don't know how to be false or silly or bitchy for the sake of it. I don't beat about the bush and I still can't stand pretentious people or game players.
I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn't scream from the rooftops or dance in the streets.
I'm still a good mum - although restricted physically in some ways, in others the IC has made me even stronger - as I'm more conscious of how lucky I am to be blessed with my two children and how big a job I'm doing on my own. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured... That much has not changed. The three of us are a tight family - even tighter than a year ago, I would say. I still love going to the park with them, even if i'm sitting on a bench for most of it, cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. IC cannot and will not take the family I've created away from me.
I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I still love the autumn leaves and the crisp night sky in the countryside when you can see thousands of ancient stars.
I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it's serious enough to warrant that.
I still follow my heart. Whatever knocks and blows I receive I retain a kind of internal innocence, which is maybe weaker now but not dead: I still believe in love, and fairies, and mermaids.
I may not believe in wishes coming true so much anymore but you never know, that could always change if mine does.
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