Wisewebwoman has guilted me into this post.
I am a beauty addict. I look for it (and I find it) each and every day. Almost all of my posts relate to that search.
However there is another side. The sunshine and roses are there but they are not the complete picture. I also live with chronic illnesses (multiple sclerosis, thyroid issues and a current mystery). They bring with them disability, bone-aching fatigue and pain. Medication issues mean that I also deal with ongoing nausea (which I have whinged about from time to time).
Some time ago my feet and legs blew up in spectacular fashion. They blew up to the point where shoes were an issue and I simply couldn't wear straight legged trousers. My general practioner of the time said definitively 'heart failure' and packed me off for a test. Which came back negative. He then lost interest.
My neurologist said that it was the wrong test - and didn't discount liver or kidney failure. I acquired (not before time) a new GP. More tests. Expensive tests. And they all came back negative. Which was good. And bad. Walking (which is already an issue) became more challenging.
The current GP didn't give up and started investigating my medication. One of them has been associated with oedema. So we scaled it back and then out. It is (naturally) the medication which was found through trial and error helped most with my pain. The swelling decreased. It hasn't gone away, but it is markedly less. Perhaps it was the medication at fault, and it certainly wasn't helped by warm weather. Further tests continue. The GP told me that I may have to make a hard decision about what I am prepared to live with - and left it to me (which is part of the reason I am happy with her). Pain is up. Swelling is down. Fatigue is up. The nausea is still there. Pain/fatigue/nausea feed off each other.
These are not things of beauty but they are undeniably a part of my life. A part of my life which frequently bores me and which I do my best to adjust to and ignore. I will continue to beat myself up for my inability to do what 'normal people (mythical beasts) manage.
And I will continue to search for and focus on beauty.
I admire Wisewebwoman and other bloggers who tell it as it is. I will occasionally follow suit.
In the interim I leave you with something which was sent to me recently. It makes a great deal of sense to me - and I need to remember it.
Dear EC
ReplyDeleteI don't think there is such a thing as a 'normal' person. Everyone has problems, whether it's health or otherwise and all we can do is to keep going the best we can.
I didn't realise just how much you were struggling with and am sending positive thoughts to you across the ether.
While it is good to be positive, it is also good to accept things are not going so well and to ask for help.
All good wishes for this week and I do hope you start to feel better.
Best wishes
Ellie
Ellie Foster: I have a fridge magnet that says that the only normal people are those you don't know very well. It makes sense to me. And yes, everyone does have problems. Thank you.
DeleteI knew you had MS and a few other complications, but did not realize it was a difficult as it is. Give yourself the grace to handle things in a way that works for you.
ReplyDeleteAnd backing down/off is an acceptable solution at times!
Anne in the kitchen: Time out is certainly an acceptable option - which I know but rarely practice.
DeleteI wish you didn't have to deal with all you do, but I admire your fortitude.
ReplyDeleteLove that meme.
Hugs
Sandra Cox: That meme is a beauty isn't it? Hugs to you dear friend.
DeleteThe meme is absolutely purrfect and a great reminder that we don't have to be.
DeleteHope your day is nausea free and filled with sparkle.
Hugs
Sandra Cox: Thank you. I really, really need to remember the wisdom of that meme.
DeleteThat meme has nailed it. Excellent.
ReplyDeleteAs someone I know and admire often says, "oceans of caring are flowing your way", EC.
jenny_o: Who could that person be? And thank you.
DeleteI truly admire you after reading this post today. Hugs, my friend.
ReplyDeleteNas: If shrieking about it would change it, I would shriek loud and long. And thank you.
DeleteI am so sorry about all you are dealing with. It sounds like you have a good doctor now and I hope the two of you can work together to figure out what's best for you. It's a good thing that you are a beauty addict. Keep it up along with doing anything else that brings you joy, you deserve it!
ReplyDeleteMartha: I have always been a beauty addict, and it and my sense of humour often keep me from drowning. Thank you. And yes, the new doctor is a keeper.
Deleteoh I like that meme, I have recently been more proactive as saying what I will and will not do or attribute my tribulations to, and as it tur out, the medication that I weaned myself off of was the culprit; hang in there and speak up for yourself, we are the ones who know best and the age old adage of "physician heal thyself" is better served at "we heal ourselves" as we know best
ReplyDeleteLinda Starr: Sadly I sometimes need help from the medicos - and at least I have one who is on the right team now.
DeleteAmen and many hugs to you!
ReplyDeletee: Thank you.
DeleteWell that just fucking sucks.
ReplyDeleteLove,
Janie
Janie Junebug: Any chronic illness is a sucky beast - but there are worse ones about.
DeleteMy wife and I have had to go doctor shopping in the past few years. You have to find someone that is on your wavelength.
ReplyDeleteMike: You do. The only wave length my other doctor was on related to money. He had the empathy of a politician.
DeleteSharp and pointed ... while deserving to be read by said 'man': loved your reply - cheers for it! Hilary
DeleteHilary Melton-Butcher: I doubt he would pay any attention. Which was one of the problems I had with him.
DeleteWhat doesn't kill you makes you stronger, is said. In my opinion, it just should have killed us sooner.
ReplyDeleteJoanne Noragon: You comment worries me a bit. Are you ok? And that said, I dislike that phrase. It makes us stronger - or it grinds us down. Hugs.
DeleteRats that the solution is that proverbial double edged sword. You do have my respect. Living with a chronic disease is not easy. I will not give advice on something I don't understand. But I hope you find a manageable balance.
ReplyDeleteAnn Bennett: Thank you. I think it will take time to find a workable balance, and it may have to be adjusted from time to time. It does at least sound possible with the assistance and co-operation of my new doctor. A win.
DeleteOmg EC, that sounds awful, the swollen legs and feet. has to be hard, nausea and pain too, hate both. LOVE YOU! I don't know what else to say except those living with chronic diseases go through and endure so much.
ReplyDeleteStrayer: Thank you. It is actually the fatigue which is most likely to push me to breaking point. Mind you none of it is fun. I am always awed at how you meet your own challenges - including pain too often.
DeleteYou are amazing. xx
ReplyDeleteaussie aNNie: Thank you. I am one of many.
DeleteI knew about the MS, but am so sorry to hear about the others. And now I feel sad that I can do nothing to help, hugs and wishes, real or virtual, do very little in the way of actual healing, although they do raise the spirits a little.
ReplyDeleteWith all of that going on, I am amazed that you still do so much, with Lifeline, your garden and blogging.
Are you eligible for home help of any kind?
River: Thank you. I may be eligible for some assistance through NDIS. However, Covid and himself's objection to strangers in the house make things challenging. We will find a way.
DeleteLife can be a bugger can’t it EC. Here’s hoping all those combined brains can come up with a workable solution for you.
ReplyDeleteTake care
Cathy
Cathy: Some days describing life as a bugger is flattery. Thank you.
DeleteI'll suspend my worrying about myself for a day at least. You have far greater challenges that I do. I'm pleased to hear you seem to have the right doctor now. My mother's doctor did not have her tested for thyroid problems in spite of her having, as we now know, the classic over active thyroid symptoms. Her legs would also swell up at night causing her to be more anxious than she already was. Not did he diagnose her asthma, which she has never suffered from before. We kept urging her to change doctors but she was worried that he would find out, which he would have. So many people have to learn to live with chronic conditions and I am sure you do with fortitude. I like Things that can be equally true. Very wise indeed.
ReplyDeleteAndrew: I should have changed doctors well before I did. I knew that he was less than stellar but it all seemed too hard. His complete disinterest when his initial diagnosis was wrong was the decider (helped by the neurologist telling me that the test he had ordered didn't actually eliminate heart failure). Has your mother got a new doctor yet? And have you got the results from her latest test? I do hope so.
DeleteI was really impressed with Things That Can Be Equally True - and hope I have the grace to remember and act on it. I hope you continue to worry about your important self too.
Please, please start to be much more gentle with yourself, EC. Really, you've done absolutely nothing wrong, nothing to deserve the pain and agony and frustrations and chronic illness...You're an amazing woman who does much more with her time and (limited) energy than most healthy people do. Lighten up on yourself. We all love you.
ReplyDeleteHealing, love, refuah shlema.
Rawknrobyn: Thank you. Muchly. I do what I can - but wish it could be more. I am (finally) taking better care of myself.
DeleteHello Sue. What a decision to have to choose between chronic pain and swelling. I hope you find a solution. I'm sure your post encouraged others who're living with a debilitating illness. Now that winter's nearly here, I hope the swelling decreases.
ReplyDeleteMuch love, Denise.
Denise Covey: I think for the moment I have made my decision. The pain has been there for a long time. There is more of it now, but less swelling. For the moment that balance is right for me. And hooray for winter.
DeleteLife is not fair at times for many people.
ReplyDeletePleasing you found a Dr. that isn't half bad, it's also these days hard to find one who is caring and will investigate right through. Good luck and take care of yourself as MS on it's own without any other issue is a right proper pain in the neck so I'm told.
Margaret D: Thank you. MS is indeed a pain but I would describe its location as somewhere other than my neck. Finding a doctor that I can respect and like is a big win.
DeleteThe struggle that all this represents must be exhausting. I greatly admire the fact that you can go on looking for and appreciating beauty. I hope you can also look for and find the support you need. The right doctor sounds like a very good start.
ReplyDeleteRelatively Retiring: Finding a better doctor is an excellent start. I should have made the search a long time ago. Better late than never - and thank you.
DeleteMy version of "beauty" differs greatly from what most people see. If a woman chooses to blow up her lips to resemble the nether regions of an ape and she has the money to do so, I am not bothered, beyond thinking her foolish. But I do not consider that "beauty."
ReplyDeleteBeauty is something far more natural. A tree, a stream, a kind word, music....these are the beautiful things of life. Giving and accepting kindness is a great beauty.
dinahmow: Our definitions of beauty match (except for music for which I have a tin ear). There is a reason that people so rarely feature in my photos...
DeleteNothing is more useless than expressions of sympathy which are accompanied by advice or tales of similar issues. What really counts is that people try to let you know that they simply care about you. I imagine a situation in which I have suffered a personal loss or received an evil prognosis-- and a friend simply says, "That sucks." No drama, no tears, just a friend who acknowledges with love what you are going through. Perhaps "acknowledge" is a key word. AFter reading what you have written, let me just say, "That sucks!" and give you a heartfelt long distance hug across a couple of hemispheres and a few zillion time zones. ♥
ReplyDeleteBill: Many, many thanks. I really wasn't looking for sympathy - but have been very grateful for the expressions of love and support.
DeleteThank you for telling about your troubles. And thanks for sharing that meme, we all need to remember this. As for normal people being the one you don't know very well, I think that is totally true!
ReplyDeleteCharlotte (MotherOwl): That meme is brilliant isn't it. I am so very grateful to the person who sent it to me.
DeleteNormal shmormal...
Good morning Sue: Living with all these issues surely makes daily life a challenge, yet you rise above it all so well, and have earned the love and admiration of all who know you. I am always grateful that I still have lots of energy and can do pretty much anything I want. I am not sure I could be so sanguine about the challenges you face, and I earnestly hope I will never have to. I suspect that no one really wants to be called an inspiration to others, but that's what you represent to me. With much love, David
ReplyDeleteDavid M. Gascoigne: Thank you - though I do hope you can find better inspirations.
DeleteSue, the varied health issues must be a challenge on a daily basis. In spite of the challenges, you give yourself to others with your volunteer work and through your blog, people throughout the world know of your wonderful spirit. I can only hope to have such a spirit. Take care.
ReplyDeleteMarie Smith: Thank you. I suspect all of us have challenges of one form and another.
DeleteThank you for your beautiful, caring post. Care for you and for others who suffer. I admire how you search out, and find, beauty in this world, despite the pain that is yours and that is in the world.
ReplyDeleteMary Aalgaard: I need beauty. It gives me solace and heart balm. And thank you too.
DeleteThank you Sue for this wonderful honest post. We can still see beauty but often our debilitation takes over too. And results in so much exhaustion which is the very worst.
ReplyDeleteIt is good to know that human beings can hide so much underneath the surface of cheer and a let's get on with it. And then we hit the wall in spite of best efforts.
I'm so glad you found that new doc and are on a different path.
XO
WWW
Wisewebwoman: That wall comes up faster and harder than I/we like some days doesn't it? And is bloody hard to climb over. Hugs.
DeleteHi Sue - I admire your fortitude and realised there was more ... just plain not easy - though the blog takes one's mind away from things ... it helps in some way.
ReplyDeleteI guess you know we're here if you decide to change the routine for a while, as you have on occasions, and know we'll be back. I'm just glad your new doctor is a keeper - she's probably grateful you're down to earth and sensible ... that must make their life easier.
I haven't met my new partner doc, as I've had dealings with another specialist doc, who's managed all I need - easy going and we get on. I was surprised therefore when the partner doc rang and wanted to chat to me ... totally floored me - it was really just to introduce herself to me after nearly 4 years - the change over happened as I went to Canada for that year - so I've never met her - and obviously with Covid I've just got on with things ... but it was good to chat to her - and we ended on a chatty companionship ... so that's good.
Life has its moments ... but I love the trips out you let us see, and your sunrises mostly ... and then your journeys to the 'roos and park ... I hope things ease up a little ... with thoughts and hugs ... cheers Hilary
Hilary Melton-Butcher: Thank you. That phone call from partner doc would have floored me - and sounds like a very, very good sign. I am very happy for you.
DeleteAnd yes, I will continue to take breaks from time to time (and another one is possibly looming).
It is good to share our pains with others so that they understand where we come from. Something I'm not very good at. I admire you for your fortitude in your difficulties and your positive attitude.
ReplyDeleteWishing you a pain free day.
Hugs, Julia
Julia: I really don't always have a positive attitude. I turn to denial/ignore much more often. Thank you - and for your wonderful wish.
DeleteSending love and hugs. All I can do is listen. Wish there was more
ReplyDeleteThe Blog Fodder: Listening is more than enough. Thank you.
DeleteI'm sorry for your health struggle. My mom lives with chronic pain. She says that the only position where nothing hurt is if she lies down. But she tries to keep positive, even though she does lie down several times during a day. She says: "What is the alternative?" As she is going to turn 87 in June, we both know what the alternative is.
ReplyDeleteSorry I can't help you, but as The Blog Fodder said, I can listen. Yes, allow yourself the luxury of complaining once in a while. We all need it as we age, at least sometimes. And we all need people who would commiserate, even if they are on the other side of the globe.
My best wishes.
Olga
Olga Godim: I know you have health challenges of your own - and have never heard a word of complaint from you. I am endlessly grateful for the blogging community I have found.
DeleteYou know how closely I feel and relate to this. Sometimes I feel weak by voicing my frustration with my health issues,. Especially when getting a blow-off by a sister when I shared I was a diabetic now ("Oh. Good Luck.") [WTH was that?]. I don't want to feel, or sound weak, and so stubborn up and shut up. I wish there was an alternative to the pain for you.
ReplyDeleteCindi: Feeling/sounding weak is a fear of mine too. Just the same as the meme says, there is nothing shameful about needing (and accepting) help.
DeleteThank you very much for this honest post. It's good to share when you know that you will be accepted and understood. Huge hugs.
ReplyDeleteGreetings from London.
A Cuban in London: And huge thanks to you too.
DeleteI'm glad you shared this. I send a big virtual hug and would give you one if I could, but that would cause pain too I'm sure. Virtual it is then xox
ReplyDeleteDeniseinVA: This post is well out of my comfort zone and I am still in two minds about sharing it - but thank you.
DeleteHugs and prayers always.
ReplyDeletemessymimi: Thank you.
DeleteLife takes us down roads we would really not want go. You and I are on roads, but you walking ahead of me. My prayers go with you, dear one. I promise.
ReplyDeleteSusan Kane: It does, but there are things of beauty on all paths. Dinahmow reminded me of one which I hold dear (kindness).
DeleteI think most of us have that other side, the hard parts of our lives that we don't share for whatever reason. I'm sorry you're struggling and are facing such a crappy choice :(
ReplyDeletemshatch: I am grateful to have that choice. For a while it didn't look as if I would. And yes, blogs are often an incomplete picture - which I am comfortable with.
DeleteNow you have made me feel guilty about all the tooth extraction pain I've written about. It got better and although not being able to eat or chew on that side of my mouth is much better. I too look for the beauty in life, but life is all the rest, too. I love your honesty and am so hopeful that you will soon be rid of the swelling and the pain. Even if that is not happening, it's my sincere hope.
ReplyDeleteDJan: Feel no guilt. Your pain IS valid - and I am glad to hear that it is improving.
Delete🌹
ReplyDeleteGiancarlo: That is a gorgeous icon. Thank you.
DeleteDear E.C.,
ReplyDeleteI so appreciate your sharing with us this candid bit about your life. I now seek out the beauty of the natural world more now than before I began dealing with chronic p*in. Filling my days--as best I can--with nature has brought me an emotional buoyancy I did not have before.
Gentle hugs from SF,
Bea x
Bea: The beauty of the natural world is a very, very welcome distraction isn't it? Mostly. And emotional buoyancy is the perfect description.
DeleteLaurie: Thank you. The person you describe is not one I recognise, but thank you.
ReplyDeleteMay your appreciation of the beauty that surrounds you help ease your pain...your discomfort, EC. I hope, too, the words of your friends in the blogging world help.
ReplyDeleteKeep taking good care...you're a strong woman. :)
Lee: Focusing on the beauty does help. Always. And thank you.
DeleteI love you EC! Thank you for your honesty!
ReplyDeleteI let out a couple of things on my blog. I think for me, mine is more mental. If that makes sense? I have went through a lot of negativity, power trips, manipulation, etc. in my life. I have always been the peace keeper, but I have kept a lot of what I have felt inside of me, which has caused me to do things, like over eat. I have been doing so much healing over the years. Like you EC, I am a beauty addict. Always sending love, too.
Please keep taking care of you!! We love you! Big Hugs!
Magic Love Crow: Of course I understand. Those mental wounds are powerful and often leave dreadful scars. I am so proud that you have done so much healing. Love to you too. Always.
DeleteBeautiful blog
ReplyDeleteRajani Rehana: Thank you. And I have read your latest post, which is true.
DeletePlease read my post
ReplyDeleteI am so very sorry to read about your pain, dear EC. I am glad you have found someone to help diagnose your difficulties. I hope your new doctor can find an even better answer to your fatigue, pain, and nausea.
ReplyDeleteUnlike you, I am not a beauty addict, but I am an honesty addict. I've been told I have brutal honesty, which is going to get me in trouble. I think that's the only way to live and be honest and true to myself. I believe you are the same, so keep us updated and we certainly won't think any less of you when you do. Trust me. I know what I'm talking about in a brutally honest way!
Bleubeard and Elizabeth: You are a creator of beauty. My mother did not have an intimate relationship with honesty - and it is hugely important to me.
DeleteIt comes across in your posts that you have health issues but you never give them center stage. We all deal with our own problems and it shows how similar we are rather than alienating anyone when you share a little about them. Hugs to you from Florida.
ReplyDeletemolly: Thank you. It feels self indulgent to focus on my own issues, knowing that we all have them... Which is inconsistent/hypercritical of me, because I really appreciate it when other people share their difficulties.
DeleteI'm sorry you're dealing with so many things. I have thyroid issues too as well as some other problems. All we can do is take things day by day and try to get by the best way we can.
ReplyDeleteMary Kirkland: True. And sometimes day by day is too much and an hour at a time is the best I/we can manage. Thank you.
DeleteYour Doctor certainly sounds good.
ReplyDeleteThinking of you and sending my good wishes.
All the best Jan
Lowcarb team member: Thank you. She is a keeper, and I am ashamed of how long it took me to make the switch.
DeletePain, fatigue, and nausea - what a vicious triumvirate. I'm glad you've found a supportive doctor, so that even when you're getting hit with these crappy things beyond your control, at least you don't feel as though you're fighting alone. Here's hoping you can soon find a livable balance.
ReplyDeleteAnd I really liked the "Equally True" posting! That's the kind of balance we all need. :-)
Diane Henders: Thank you. Equally true makes a great deal of sense doesn't it? Sadly I often forget/disregard important parts of it. A work in progress.
DeleteMe, too. My mantra these days is, "I'm still learning". :-)
DeleteDiane Henders: Yes. And there is a lot to learn. Some of it sadly I need to learn repeatedly.
DeleteOh EC I've only just caught up with this post, and I admire your honesty and openness, it's a gift I'm working on. I also admire your ability to find and share so much beauty, and I hope your new GP has a brainwave that helps you to feel considerably better, and the sooner the better.
ReplyDeleteKim: Thank you. Beauty is a gift which keeps giving and giving. Sadly my GP has no more ideas, but at the moment I am managing.
DeleteThere's so much I want to say, but it's all choked up in a bottle neck.
ReplyDeleteYou have the same spirit of many women I admire.
I watch my mother deal with pain too, and how it hurts me.
I'm sending hugs, love, and positive vibes to you.
Like you, I seek beauty, but for another reason. There's so much sorrow out there, why should I, as a writer, send more out there?
neena maiya (guyana gyal): I don't ignore the sorrow or the pain, but the beauty is an excellent antidote.
DeleteI know exactly what you mean. I know you don't ignore it. I remember that you have counselled those in pain. The mind needs somewhere lovely to go to after all of that.
DeleteMy very first manuscript, which I haven't published, deals with this.
neena maiya (guyana gyal): Thank you. I don't ignore it (and it doesn't let me ignore it), but beauty (and there is a lot of it about) is a wonderful distraction. I do hope you are planning to publish your first manuscript. And yes, that is a hint.
DeleteAh my dear I send love your way. I get pitted oedema in my left foot and ankle regularly, usually by the end of the day, it's quite freaky isn't it? Legs up helps but I don't like the feeling much, overnight and they look fine the next day. I know yours are worse, I can tell, stay smiling and keep smelling those beautiful flowers Xx
ReplyDeleteRuby End: Thank you. Sadly my legs don't go down overnight - which I told doctor the first when he told me to keep my feet up. He didn't listen. Of course.
Delete