Do you ever have those things you long to get back to, but no matter how much you try to marshal your energy, it doesn’t happen? Writing in my blog is one of those things.
I actually have written in my blog – since my last entry on Christmas Day, 2014 (I can’t believe that!) – but I wasn’t ready to publish what I’d written, and I was in a crappy place. Not that I promised to always come here full of light and energy – that’s not real life with a chronic illness – but at various times in the past year I’ve been deep in the hole with depression, thrown about like a stuffed doll by a malady I didn’t even know I had – anxiety, and for the past 4 or more months… maybe longer… wracked by increasingly intense migraines that have left me bedridden half my days.
Despite all that, I achieved some important things last year, and I’ll write about them sometime, as well as struggled to be okay with my various illnesses. No, it isn’t always easy, but sometimes, it’s the only sane thing to be okay with what is. Trying to be anything else can make us crazy.
So here I am in one of the worst flares I remember in a while. My body is producing some of those little cigarette-burn lesions it produces when I am either really sick, or removing toxins. I’m not sure which one it is. I have been trying to greatly reduce carbs (grains, breads, pastas, flours) in my diet, in a last ditch effort to beat the migraines. I am on the 8th day of being migraine free. That’s a small victory. It doesn’t mean I’m out of the woods yet, but I hope.
The main problem with this dietary approach is, what do you do when you’re too sick to prepare food? It’s a common problem faced by many of us with chronic illness. I got up at noon, feeling wretched, but hoped to make something to eat for dinner. Got half way through, realized I didn’t have all the ingredients. Walked to the nearest shop. Got back, shattered. It’s just after 2pm, and I want to go to bed. I’m hoping to finish throwing together the rest of this meal, save it for later when I’m well enough to eat it, and do just that.
It’s just after 2pm, and I’m having my first meal of the day – a prepackaged green smoothie, my meds, and my day is done. I’m okay with that, really. Some days are like that, you only get two good hours to do what you need to do.
The problem is, how do you represent your day to people when you’re torn apart by invisible illness? One of my chair yoga students asked me what I meant by “invisible illness” – I’m realizing that’s not a term that’s gained wide currency – and I was too tired to explain. I said, it’s the same as a chronic illness.
Except it isn’t. Noone can see what’s wrong – why this girl who seems to be in one piece can only get two good hours some days. And I’m one of the lucky ones. I read about people with ME/CFS, Lyme disease, and others in my social feeds when I can – people who are bedridden 24/7 – and I know I could have it so much worse.
I was able to get up today. I was able to walk to the store. To some people that’s like winning the lottery.
Puts it in some perspective.
Okay, time to make sure nothing’s left to burn on the stove. Time to rest.
Hi again Jane ♥️?♥️
It is very difficult to explain a day in the life to someone who hasn’t suffered. When you try to tell someone who has been throug the same thing you can see the understanding in their eyes. People can be really comforting and understanding of your situation, but they can’t really *know* unless they have been there
Lovely to see a post on your blog too and such positive news amid the bad ❤️❤️. I too have a post I wrote two years ago, titled ‘yes I chose this…’ And it is full of bile I would love to spit at people who say I chose this way of life. I didn’t post it, as it is just too negative and wouldn’t help anyway, but I sometimes read it and still think sometimes I’d like to post it when people say nasty things to me but I never shall I don’t think. I’m too positive these days lol..drat :)
So glad to hear that you are getting positive effects changing your diet. As I have said before even though I have been through the darkness of the soul it was years ago and touch wood (touches head lol) I won’t again. I can’t even begin to imagine what it would be like to have the body I have right now and the darkness… I really admire you for getting out there and putting your feelings out in a blog. I’m sure there are people out there who will read this post and not reply as they are too scared or too tired but they will feel apex aptly as you do…so for them I will say a huge
Thank you ❤️❤️❤️❤️❤️
Thank you for writing, Sweetheart. Yesterday was ghastly, but of course I spent a lot of time in bed second-guessing myself. Who am I to whinge and whine, when others have it so much worse? And, who cares you had (another) crappy day. I wasn’t quite feeling sorry for myself, but it felt close to it, and I was considering deleting this post as something that should wait until I could put a more positive spin on it – as much as I hate the word “positive”, as it seems to damn most everything I experience as not being “positive” enough. LOL
But if there is a word that says what I feel, I guess it’s hopeful, and yesterday I felt very low on hope.
I am excited that I might be on the verge of breaking these god-awful migraines, but I’m also a little worried as I have such trouble putting together the right sort of food for myself when there’s no energy in the bank to withdraw. My energy is so depleted that I’m a little scared. I’m going to offer a second chair yoga class a week for my students, but I’m worried that it will drain me too much, as it did last year. I was hoping the dietary changes might help, and I’m sure they will, but there’s this scared little voice that worries it will undo me all over again.
So, thank you for saying thank you – thank you for your encouragement. I’ll be brave and let things stand, and it’s thanks to your encouragement, lovely.
That actually means a lot to me as I am mostly bed bound now. Weirdly since the end of last year I actually have an ME specialist OT who is a lovely lady. I’d been diagnosed with ME since 1994 but hadn’t ever seen anyone ‘official’ about it so you know how it goes, you start to doubt yourself don’t you?
Since I crashed a few years ago I’ve been trying to grade up my activity again but keep crashing and having her has been such a bonus to me. She hasn’t been able to tell me much I don’t know already after nearly thirty years, but her actually saying to me I didn’t need to buy a book she has written about ME and how to give yourself the best chance of overcoming it because I ‘ knew it all already’ filled me with such happiness.
I’m doing my 100 days of happy blog again this year which is proving challenging some days but two things I have had to do is change my resting (apparently listening to Celtic music and Enya isn’t actually effectively resting as your mind actually pays attention to it) so nature sounds are the way to go.. And I’ve had to stop helping my friends for a bit as it is ‘me’ time to try to get my body straight first.
Therefore I think you don’t really have enough energy in your envelope to offer the second chair yoga class…yes, I know I don’t know you lol…but you seem a lot like me.. You find something that really helps you and you want to give the knowledge to just everyone. Maybe in the future I would say but now it is Jane time. You need to build yourself up..and then maybe you would be able to do three classes ;)
I really miss chair yoga I have tried bed yoga when I am able but it just doesn’t seem ‘right’ lol yes I’m very weird
..but if you fancy taking advice from someone you don’t know then I’d say no to more chair yoga classes and instead use the time on your relaxation and reflections so you are stronger if that makes sense? ..and of course if you want to peek at my happy blog I can send you an invite lol..mots nothing special. Some days I can’t even talk..but I find it lovely to look back on. Big ((((hugs)))), Gail xxx
Oh no I just wrote a really long thing and I think I lost it :0
Basically it was a lot about me (which you don’t need to know I guess lol)
That I thought you shouldn’t do the extra yoga class and use the time as Jane Time so maybe in future you could do three classes
That I missed chair yoga as bed yoga just doesn’t do it for me lol
Bummer….it was such a long post but I don’t have the energy to rewrite it lol
Oh and that I can send you an invite to my happy blog if you like lol
Hehe forty lines of text condensed into this….
Life eh? :)
Awww – I’m so sorry, hon – I thought maybe your post got held up in moderation, but I can’t see it anywhere. I hate it when things go walkies off into the void! I’m always interested in what others have to say – in my book, personal experience is the most powerful kind of writing, and as you suggested earlier, even if as a reader we are too tired to write much back, at least we can nod our head in agreement.
I’m trying to add this new class in a responsible way – I deliberately delayed starting so I felt better. I guess I had no idea my body would revolt so thoroughly over this new way of eating.
I actually have had thoughts of taping some bed yoga classes LOL – as I do practice a little in bed – but by that stage I’m usually too tired to get a camera set up and at least brush my hair and teeth. LOL.
Take care of yourself!
And of course positivity can be destructive if you use it to cover stuff up. I am a very positive person but sometimes negative things also need exploring. I do not envy people such as yourself that have the black dog keep attacking you *and* painful chronic illnesses. I can just about cope without the dog thank you very much… If I had that to cope with too I would find it very difficult indeed
..but you do need time for yourself, to get stronger, so you can help more people further down the line. Otherwise you will spread yourself too thinly, nobody would benefit and you would be a crumpled heap on the floor
I only saw you posted as I got an email from when I read your posts years ago lol…I must still be subscribed…mouth have yourself a stalker, Jane :)
Of course apex aptly was supposed to say exactly lol xxx
Thank you Jane for being a light through the dark and giving a voice to those who are suffering in silence.
Sending you love and blessings!
You are my angel!
Thank you for writing, DearHeart – you are always in my heart and thoughts, and I’m sending loving energy with the hope that your suffering will ease a little. *big hugs* It has always been my hope that at the very least, my scribblings will let let people know it’s okay to feel the way they do. Hope to see you soon. I have been a little out of it lately. All my love. <3
Hi there. Has anyone actually biopsied the lesions you are experiencing? I have not read all of your posts but came across your blog when trying to read more about seronegatibity and sjogren’s as i met a patient recently with extremely dry and irritated eyes and features of inflammatory back pain and small joint synovitis. If you have not had a biopsy done I would ask hut primary care provider to do one.
Thanks for your message. No, I’ve never had one of the lesions biopsied. For the past 8 years, I had an extremely poor relationship with my GP, who was usually too busy to spend more than a few minutes with me. Consequently, I did very little to advocate for my own health in that time. I have fortunately just connected to a good GP, as the previous one moved away! The new GP is on vacation now, but I will be seeing her in a few weeks for my first physical in many years. Alas, it looks like this present outbreak may have cleared up before then, but next time I have an active breakout, I will definitely ask her.
All the best,
I’ve never been in such a dark depression. I had cancer. During chemotherapy it was discovered i had a rare enzyme,chemotherapy nearly killed me. Two yrs later, I suffered respiratory failure. I came back from both. This past winter I developed a metallic taste in my mouth. It exploded in February. I found out i have burning mouth syndrome. The peripheral neuropathy i am now experiencing is muchworse than what occured during chemotherapy.
The most crippling aspect is this depression.
Is this, could this be Sjogren’s?
Thanks for writing, hon. Wow – you have been through so much! Take a moment to celebrate that you are a survivor! Having said that, I know that it’s hard to celebrate anything when you are in the depths of depression. While I can’t diagnose what you are dealing with – that’s for your doctors – I can state that I’ve done a LOT of reading about the role of inflammation in the body on depression, and a lot of reading about Sjogren’s, and depression definitely occurs more often in conjunction with illnesses like Sjogren’s.
The most important thing for you to do at this point is to get support with your depression. If you’re not getting enough help from your general health care practitioner, get in touch with an emergency help line to learn where you can get more help where you live. Just as you had help dealing with the cancer and the respiratory failure, you need help to deal with your depression. It’s not something that you can snap out of, and if you feel unsafe, you need to get a safety net of different types of support around you, as soon as possible.
Here is a link to Befrienders – which includes a directory of help lines from around the world. Please hang in there. I’ve been in the lowest of places with depression, and I can promise it gets better, and I’m glad to be where I am now. I hope you believe me when I tell you that you are worth it!
Take care! Hugs,
Thank you for writing.
I saw my dr today. We talked about flares. Though not formerly diagnosed, she is helping me
I had a therapist during cancer. I think it’s time to return!
We live in an area of the USA with a limited # of rheumatologists. Our medical system is ailing.
And! Yes. I survived a host of issues. People had me dead and buried several times. Down, yes. Out? No.
This hit with a vengeance in Dec/Jan. I am stepping back into some light. One or two difficult days. A good day. I wrote you on a very difficult day. Scared me.
This is/was very different from cancer. When there is a diagnosis, though it may be difficult, i knew what was wrong with me. This has been challenging; limping along and nothing beyond. “Wide speead chronic pain”. (yes, i can diagnose that!)
You have shared your heart along and health issues. Your blog/facebook are very helpful.
May you find better days ahead.
Bloggers helped me to find help for our daughter. We adopted her at birth. If not for bloggers, i would have never found out what she has. They led me to doctors who helped.
I am so glad it is a better day! Having better days help, I know! Also, having support really helps – I am so glad you are going to see your therapist. *hugs*
It took 12 years for me to be diagnosed with an autoimmune disease. As awful as cancer is, and I hope I never have that diagnosis (have been diagnosed with pre-cancer – let’s hope it stays that way!), at least knowing what you are dealing with stops some of the crazy-making. And it is crazy-making not knowing – thinking that doctors believe you are making it up. It is only now some 26 years later, that I am okay with not getting a doctor’s validation. I know how ill I have been and still am, especially during flares. Flares are awful. I’ve written about flares a little on the site. Here’s the main one:
I am so glad my posts help a bit – it’s wonderful that I can turn some of my straw into gold. Writing is my therapy. I haven’t written for a long time, and I’m feeling it in my general levels of wellness, especially depression and anxiety, so I’m building more writing into my days again. Find something that helps you transform some of that pain – something you’re passionate about. It really does help.
So glad to hear you have found help for your daughter. I adopted my partner’s children when they 9 and 12. Making a difference in a child’s life is awesome. Your daughter must love you!
Take care, and reach out anytime you need to vent. I may not have much to offer, but I’ll always hold you in my thoughts and prayers!
Autoimmune disorders are so difficult to diagnose. First, we have something going on that is so wrong. Next, we find ourselves telling a doctor what is going on. Then! Tests don’t always tell the whole story.
I’ve see two drs. Both said they do not care if i pass the “gold standard” tests. Whether the rheumatologist sees it like this remains to be seen.
Years ago, we watched, Mystery Diagnosis. When our daughter became a medical mystery, i understood the tears, frustration and the level of perseverance and persistance that you go through. I also learned a great deal about the medical culture. That learning curve served me well; the curve no one wishes on anyone.
Our daughter is now almost 26. She is a most remarkable, tenacious and resilient person. She’s been through things that would put most people away. Divorced with 2 toddlers, she works and attends college. When I experience ‘bizarre’ days. I know she has had many of the same experiences and worse.
Being a grandma, taking care of dogs, husband and now that summer is here, a garden keeps me busy.
My days of ‘running way past empty’ are having to be adjusted. My next new normal is here.
Take care. Write anytime. Thank you again.
Good night, Jane.
Thanks so much for writing that supportive note back to me. Always appreciated! Big hugs. I have been dealing with a return of my migraines the past couple of weeks. Lots of folks have told me that their migraines are triggered by spring allergies, so hopefully that is just what’s going on here, and that this will pass soon. Right now I am taking way more pain killers than I would like.
I am so glad you have two doctors on your side. Rheumatologists are an extremely funny breed. I have met three – the first one that diagnosed me and retired. The next two were very dismissive and said I just have fibromyalgia because those “gold standard” tests were not all positive. The original specialists I dealt with many years ago caused me a lot of grief as well. My inflammation was off the charts – ESR (which should be 0-20 mm/hr) was 102 – but because they couldn’t find anything specific I was foundering on my own. Seemed they were only too willing to diagnose me as depressed and crazy! It turns out one of those early doctors was at least honest in that I was probably dealing with something, but it wasn’t clear what it was, and so I’d have to go on and live life as best as I could. And it turns out that’s pretty much what happened. Getting the diagnosis really helped me, even if those later doctors wanted to overturn it on a 10-minute consultation, because everything that’s happened since has pretty much agreed with the Sjogren’s diagnosis. So, if it walks like a duck, quacks like a duck… :)
I think it’s a good thing we have children when we’re younger – I certainly find it hard to manage now. Love seeing my grandkids, but I know I’m not involved nearly as much as many grandparents, and I have to be okay with it. Just getting through the days is enough! Your daughter sounds amazing. It is true that sometimes the challenges make us stronger, better people – but I wish we could do that without all the heartache!
I hope you are feeling as well as possible. I just wanted to say thanks again!
Good to hear from you.
We are supposed to have some rain today. It’s clearing in the west. Perhaps my watering by hand chased it away?
Neuropathy is bad. Go away.
Saw my ENT and asked if this was chemo related. All the mess with enzyme deficiency. Probably, yes. Need to remember to use a towel to get things from fridge on bad days.
My magical thinking question. Could i wake up and it all be gone? No one can answer that.
I am having another hearing test. It’s been a while.
I am painting the kitchen cabinets. I love chalkpaint. We have a local shop that sells all natural chalkpaint. The pups love to eat the wax. No! It’s not for you! Paint. Wax seal. They have many glazes and awesome ways to use their paints. I am going simple on these cabinets. Amazing difference…from old white latex paint.
I was 37 and my husband 41, when we adopted. I love our grandbabies…i do wish we were 40somethings to have much more energy! We do pretty well. They are busy. They are pretty easy kids for toddlers.
I’ve got two flats of flowers to plant. I have neen very slow this season. Tomatoes are in the ground. One more needs to be potted.
We will have produce in September. The sunflowers and zinnias are coming up.
Are you able to paint?
I am no painter but love to play with paint. I told a friend, i dabble in crafts. It’s fun.
I hope today is a well day for you, Jane.
Hugs to you, Kathryn