Where on earth to start?

[JoKalsbeek]

HI all.

Been a while since I've been properly on here, and I still don't quite know whether or not I'm back. I was advised to just talk for a bit to you guys on here, so yeah... I just don't know where to start. There's been so much going on. The past year's been.... Well, difficult. A year and four days ago, my husband and I got C19 for the first time. We'd been practically isolating for 2 years, and that was for my sake, really, with my iffy health. Turns out though, my perfectly healthy husband got Long Covid, and was hit hard by it. His mind just went for a while, (They call it brain fog, but it was more like living with someone with senile dementia. It was that bad, and he can't remember the bulk of those first months of illness) which was thankfully helped by temporary use of an antidepressant to fix the burnt out/damaged neurons, but the extreme fatigue, muscle pain and whatnot, well. He's still on his way to recovery. This also meant the tables were turned: He was my carer, and now I had to be his. I went grocery shopping on my own, in spite of my anxiety, which meant ruining the muscles in my lower back (seeing a physical therapist), and, well.. There's only so much I could do. Being what I am (a mess), our home wasn't fit for visitors for a long time. Still not quite, really. With Kornelis out of the running, and me being unable to keep up much on my own, well... It's was clean, but it was chaos. I spent my time doubling down on all LC research I could find, got Kornelis into an experimental treatment that did speed up his recovery a bit until he plateaued, and he's slowly starting to work again, 2,5 hours a day, for three days a week, at present. In the meantime, kidneystones really got to me. I thought I was doing well, after being told that stones are usually calcium-oxalate, and hey, you can fix the oxalate component with a carnivore diet... No oxalates in that! My migraines got better as I went full carnivore, not even having side salads anymore, my blood sugars were amazing, I felt mentally better than I had in a long time, no more IBS and what have you... And about half a year after the first of many, many kidneys stones came up, I was told, as if it was of no consequence, that my stones were completely comprised of uric acid. Which basically means I got them from *animal protein*, not from plant-oxalates. I'd been growing them like mad, my right kidney a vertiable gravel pit. And I was loving the carnivore diet, as it made me feel so healthy and clear. I stopped, and tried to balance things out with veg, an lots of sodium bicarbonate. But then I had another few things to deal with: The C19 vaccinations caused bladder pain and made me unable to eat certain foods (especially tomatoes are a nightmare), and the C19 infection that floored my husband, actually got to me too: He wasn't the only one with Long Covid, he was just worse than I was and it took a while for me to clue in that the constant fatigue was coming from somewhere. Not to mention... The weight gain. Over the last year I've been steadily gaining weight, while I might not have been on carnivore anymore, I was still on a ketogenic diet. I've had C19 a multitudes of times since then, as I keep getting it from all the therapists and health center visits we've had.... We went from not going anywhere for two years to several appointments a week, and no amount of desinfectant kept the virus at bay in those waiting rooms. I lost count at some point, but I think it's been 8 infections in the past year, for me. Kornelis dodged the last two, thankfully.

So.... That said... A few months ago my mom had a COPD attack, and while they did a thorax x-ray they discovered a tumor with a little pal in her lung. Normally they'd just take out the entire lung, as with the tumor up top and the metastasized little b****r a little farther down, that was the sensible thing to do. But not with already COPD-damaged lungs. She'd be unable to breathe, on top of being 100% unable to survive surgery, as her heart and lungs can't withstand anesthesia. What followed was intense radiation therapy, with the aim of just killing off everything in there. So far, the treatments seems to be worse than the cancer, as mom's in the hospital again (she's there all the time now, and hates it), in extreme amounts of pain and lots of difficulty breathing, and from what we're gathering, it hasn't had the effect we were hoping for. Nothing official yet, that's for an oncology appointment tomorrow, but... We're bracing ourselves. To a point where I've started making a list of people to invite to the funeral, should it come to that. (I have to keep busy, that's just where my morbid mind goes.). Honestly, I can look into her medical file online, and while I need a doc to interpret properly what the test results mean, well... It just really, really doesn't look good, and while I haven't told mom (like I said, I am not qualified to interpret anything I've read), she told me yesterday what she feels is going on inside her... And it seems like she's spot-on. With all this going on, I've started eating my emotions in the past few months. They're still there, so it's not helping one iota, and it's still pretty low carb, but.... The weight is piling on. A little bit in my face, not on my arms or legs, but you guessed it... It's practically all abdominal fat, and it's getting into my liver and kidneys again. I know what I should be doing, not walking to the cupboard for nuts every 5 minutes, and to the fridge for extra dark chocolate every ten... Doing one or two meals a day would see me through this, probably, though it's hard to keep my kidneys happy as autophagy means acidic urine... Assuming it's all just down to the LC and emotional eating, and not adding perimenopause in the mix, which I suspect may be a factor (and HRT isn't an option due to my migraine-treatments).

I know how all this works. Even if there are other factors at play, I know what I have to do. I'm just so horribly sad and feeling useless to help anyone I love, all the time. I define my worst episodes of depression as an absolute lack of hope, and while this has been going on, hope's started to be spread very thin indeed.... Call it non-existent, rally. Kornelis is still slowly recovering and needs my help, while we heard yesterday that he might lose his current position, and he really loves his job. My mom's just trying to stay alive daily and I can't zap tumors myself. Between my kidneystones, back- and hip issues, my migraine medication being unavailable and the other stuff I'm on now making my rheumatism flare, I feel like I'm not capable of anything. I'm so very, very tired and I can hardly sleep. Kornelis' uncle is dying of cancer and we're trying to be there for him and his lovely wife, but there's only so much we can do. Everything is pain, everything is feeling helpless and useless to do anything for the people I/we care about.

So yeah. Nuts. Chocolates. Doing everything I know I shouldn't. So this past week I've gotten new scales, as the old one seem to be on the fitz (I'd love to believe I'm 80 kilo's now, but I think 86 is more realistic. Which is what the old one kept swinging between, 5 minutes apart!), so I'll be popping some batteries into that this morning. I know what I should be doing, I'm just terrified it'll make my kidneys worse again. I am afraid to leave the house without enough morphine to floor a horse. And, and, and... I know, it's all excuses. It's just really hard to find a balance between the foods I can still eat (migraines, diabetes, bladder pain, Hashimoto's, Sjögrens and kidneystones are really throwing a wrench in!) and trying to lose weight while feeling wretched and eating little bits too often. I'm trying. And maybe being back on here will help. I know what I should be doing, and maybe going over those things with newbies again, will help me get back on the straight and narrow. Ironically enough, it'd be so much easier if I could just go back to the meat-fish-poultry-eggs regime, as it was a cinch and tasty to keep up, but... Not an option. D***ed kidneys. I'll have to get it sorted somehow. A little going-over-the-basics regularly might help. It does make me feel like a fraud, but maybe listening to myself preach some more, I'll be able to start practicing it again properly, too, if that makes sense. So do forgive me for being a hypocrite. I know what I should do, I know what would help others as well... I'm just having a hard time adhering to it for the time being. Sorry.

Love,
Jo, who still feels quite unstable at the moment so isn't quite sure whether this is a good idea.

 

[finzi1966]

Oh my goodness Jo xxxxxxx. I haven’t got anything constructive in the way of advice, I a, just so so sorry to hear how difficult things are at the moment - the amount your are dealing with would be enough to floor *anyone* and you are doing super-well to just be putting one foot in front of the other.

 

[zand]

Nothing constructive to offer either, just lots of love and hugs (((((())))))

Picking out one or two things that I have experienced...

When you are ill yourself and caring for others too it's normal for the home to be messy. Mine still isn't sorted years after the events that caused the chaos and still isn't fit for visitors except for 1 or 2 rooms.

Weight gain too is pretty normal under these circumstances. I know it's horrid and depressing to be losing control of it a little, but your are going through such a very tough time. Be gentle with yourself. If you can't lose weight just yet, then accept that. Do your best but don't beat yourself up.

Yes, I've had Covid at least 3 times, but I suspect it maybe as many as 5 times. My brain hasn't fully recovered and I get irritated when family don't understand this.

You are doing really well to manage to post. I struggle with the simplest of communications when stressed. Be proud of yourself for what you are achieving.

Thinking of you and the appointment tomorrow.
x

 

[AndBreathe]

@JoKalsbeek , you have so much going on and so much you'd naturally prefer to be doing.

Nobody can tell you how to balance your emotional physical and emotional ledgers. Sometimes they simply can't be, so I'd just say, keep putting one foot in front of the other. Weight gain you can sort out another day. You don't need to be beating yourself with that horrible stick. Housework and cleaning is over rated. It doesn't help you heal.

Nice to see you back. I just wish the circumstances were better.

 

[HSSS]

Oh Jo, you are not making excuses! You are and have been going through hell for the last year not just in one respect but many different ones. It just looks like it’s coming at you from every direction. No one would have a sparkly house and be skipping down the road. No-one. Can I ask you to go back to what you wrote to lucylocket just a few hours ago And read it as written to yourself? You aren’t alone, even if all we in here can do is listen when you need to vent

Whilst I too am struggling mentally, have put on weight, have higher glucose, eating the wrong stuff (and the right stuff) thus often feeling a fraud in here I have not going through even a tiny bit of what you are. Covid, hospital and steroids and subsequent brain fog have added to my issues too though so I hear you there. My house doesn’t alway meet properly clean let alone tidy and fit for non existent visitors. The kitchen is my main goal the rest is hit and miss. So be it. I dont foresee in my old age wishing I’d done more housework as a big regret in life.

The bit about kidney stones - was it established as fact the stones were uric acid or was it an educated guess? If it was the latter can you get it confirmed or refuted conclusively in case the carnivore option could still be open if in fact they are oxalate. Can you get some medicinal help with the diabetes, and very very understandable low mood? I always fight against these trying to do it al on my own but I’m not so sure we always should. Sometimes a temporary bit of help can get us through the worst moments til we can resume the fight alone later when the worst has past.

 

[Outlier]

What a shedload of asterisks you are going through! Life does seem to dole out bad stuff in massive amounts while rationing the good things to small and infrequent. I think you are doing a sterling job. It's all about prioritising right now, and don't forget to include yourself in the list.

You can deal with stuff like weight when the pressures on you ease off. One day you will think "I can get stuck into this now" and you won't buy the foods you don't want to watch yourself eating. Meanwhile, on the list of crutches that help us steer through stress and pain, eating dark chocolate is pretty low compared to things you could be doing. Cut yourself some slack, and we are all here to listen.

 

[KennyA]

It is good to hear from you even if it is with news of what you're having to bear. Nothing I can say will make it any better but this forum has its uses.

 

[jjraak]

@JoKalsbeek .

Nice to see you posting again, even if the reasons might not be the best you'd hope for.

And personally, I think putting it out there & talking about it is cathartic .....helped me sieve out the rubbish thoughts and firm up & clarify the best approaches, etc.

And no fraud involved when you've "been there ..done that " either

We all need life coaches at different times, I know you've been a great help to many.



Everyone's said it above ..no words here make it better.

But having my own annus horribalus last year..I do have some small insight.

We all think we're coping ok, because when the going gets choppy, we manage until we get back to calmer waters..and pat ourselves on the back for coping with several things at once ..and rightly so .

But every once in a while we get hit by a BIG storm, and then isn't to time to multi task tidying up the deck.

It's a time to batten down the hatches, get everyone inside and ride it out as best we can.

That's the time you protect those important to you, anyway you can.

And sometimes that IS by cutting ourselves enough slack & letting other things slide, so we CAN concentrate on keeping ourselves going, one foot in front of the other, for as long as it takes.

And when the storm passes, as they all do, THEN is the time to look over the ( life) boat and see what needs doing and when you can do it .

Best wishes to all, jo.
You for finding a way through the labyrinth of advice re kidneys & diet.

Results for mum are more positive then you anticipate
& Kornelius keeps on improving .

 

[lucylocket61]

HI all.

Been a while since I've been properly on here, and I still don't quite know whether or not I'm back. I was advised to just talk for a bit to you guys on here, so yeah... I just don't know where to start. There's been so much going on. The past year's been.... Well, difficult. A year and four days ago, my husband and I got C19 for the first time. We'd been practically isolating for 2 years, and that was for my sake, really, with my iffy health. Turns out though, my perfectly healthy husband got Long Covid, and was hit hard by it. His mind just went for a while, (They call it brain fog, but it was more like living with someone with senile dementia. It was that bad, and he can't remember the bulk of those first months of illness) which was thankfully helped by temporary use of an antidepressant to fix the burnt out/damaged neurons, but the extreme fatigue, muscle pain and whatnot, well. He's still on his way to recovery. This also meant the tables were turned: He was my carer, and now I had to be his. I went grocery shopping on my own, in spite of my anxiety, which meant ruining the muscles in my lower back (seeing a physical therapist), and, well.. There's only so much I could do. Being what I am (a mess), our home wasn't fit for visitors for a long time. Still not quite, really. With Kornelis out of the running, and me being unable to keep up much on my own, well... It's was clean, but it was chaos. I spent my time doubling down on all LC research I could find, got Kornelis into an experimental treatment that did speed up his recovery a bit until he plateaued, and he's slowly starting to work again, 2,5 hours a day, for three days a week, at present. In the meantime, kidneystones really got to me. I thought I was doing well, after being told that stones are usually calcium-oxalate, and hey, you can fix the oxalate component with a carnivore diet... No oxalates in that! My migraines got better as I went full carnivore, not even having side salads anymore, my blood sugars were amazing, I felt mentally better than I had in a long time, no more IBS and what have you... And about half a year after the first of many, many kidneys stones came up, I was told, as if it was of no consequence, that my stones were completely comprised of uric acid. Which basically means I got them from *animal protein*, not from plant-oxalates. I'd been growing them like mad, my right kidney a vertiable gravel pit. And I was loving the carnivore diet, as it made me feel so healthy and clear. I stopped, and tried to balance things out with veg, an lots of sodium bicarbonate. But then I had another few things to deal with: The C19 vaccinations caused bladder pain and made me unable to eat certain foods (especially tomatoes are a nightmare), and the C19 infection that floored my husband, actually got to me too: He wasn't the only one with Long Covid, he was just worse than I was and it took a while for me to clue in that the constant fatigue was coming from somewhere. Not to mention... The weight gain. Over the last year I've been steadily gaining weight, while I might not have been on carnivore anymore, I was still on a ketogenic diet. I've had C19 a multitudes of times since then, as I keep getting it from all the therapists and health center visits we've had.... We went from not going anywhere for two years to several appointments a week, and no amount of desinfectant kept the virus at bay in those waiting rooms. I lost count at some point, but I think it's been 8 infections in the past year, for me. Kornelis dodged the last two, thankfully.

So.... That said... A few months ago my mom had a COPD attack, and while they did a thorax x-ray they discovered a tumor with a little pal in her lung. Normally they'd just take out the entire lung, as with the tumor up top and the metastasized little b****r a little farther down, that was the sensible thing to do. But not with already COPD-damaged lungs. She'd be unable to breathe, on top of being 100% unable to survive surgery, as her heart and lungs can't withstand anesthesia. What followed was intense radiation therapy, with the aim of just killing off everything in there. So far, the treatments seems to be worse than the cancer, as mom's in the hospital again (she's there all the time now, and hates it), in extreme amounts of pain and lots of difficulty breathing, and from what we're gathering, it hasn't had the effect we were hoping for. Nothing official yet, that's for an oncology appointment tomorrow, but... We're bracing ourselves. To a point where I've started making a list of people to invite to the funeral, should it come to that. (I have to keep busy, that's just where my morbid mind goes.). Honestly, I can look into her medical file online, and while I need a doc to interpret properly what the test results mean, well... It just really, really doesn't look good, and while I haven't told mom (like I said, I am not qualified to interpret anything I've read), she told me yesterday what she feels is going on inside her... And it seems like she's spot-on. With all this going on, I've started eating my emotions in the past few months. They're still there, so it's not helping one iota, and it's still pretty low carb, but.... The weight is piling on. A little bit in my face, not on my arms or legs, but you guessed it... It's practically all abdominal fat, and it's getting into my liver and kidneys again. I know what I should be doing, not walking to the cupboard for nuts every 5 minutes, and to the fridge for extra dark chocolate every ten... Doing one or two meals a day would see me through this, probably, though it's hard to keep my kidneys happy as autophagy means acidic urine... Assuming it's all just down to the LC and emotional eating, and not adding perimenopause in the mix, which I suspect may be a factor (and HRT isn't an option due to my migraine-treatments).

I know how all this works. Even if there are other factors at play, I know what I have to do. I'm just so horribly sad and feeling useless to help anyone I love, all the time. I define my worst episodes of depression as an absolute lack of hope, and while this has been going on, hope's started to be spread very thin indeed.... Call it non-existent, rally. Kornelis is still slowly recovering and needs my help, while we heard yesterday that he might lose his current position, and he really loves his job. My mom's just trying to stay alive daily and I can't zap tumors myself. Between my kidneystones, back- and hip issues, my migraine medication being unavailable and the other stuff I'm on now making my rheumatism flare, I feel like I'm not capable of anything. I'm so very, very tired and I can hardly sleep. Kornelis' uncle is dying of cancer and we're trying to be there for him and his lovely wife, but there's only so much we can do. Everything is pain, everything is feeling helpless and useless to do anything for the people I/we care about.

So yeah. Nuts. Chocolates. Doing everything I know I shouldn't. So this past week I've gotten new scales, as the old one seem to be on the fitz (I'd love to believe I'm 80 kilo's now, but I think 86 is more realistic. Which is what the old one kept swinging between, 5 minutes apart!), so I'll be popping some batteries into that this morning. I know what I should be doing, I'm just terrified it'll make my kidneys worse again. I am afraid to leave the house without enough morphine to floor a horse. And, and, and... I know, it's all excuses. It's just really hard to find a balance between the foods I can still eat (migraines, diabetes, bladder pain, Hashimoto's, Sjögrens and kidneystones are really throwing a wrench in!) and trying to lose weight while feeling wretched and eating little bits too often. I'm trying. And maybe being back on here will help. I know what I should be doing, and maybe going over those things with newbies again, will help me get back on the straight and narrow. Ironically enough, it'd be so much easier if I could just go back to the meat-fish-poultry-eggs regime, as it was a cinch and tasty to keep up, but... Not an option. D***ed kidneys. I'll have to get it sorted somehow. A little going-over-the-basics regularly might help. It does make me feel like a fraud, but maybe listening to myself preach some more, I'll be able to start practicing it again properly, too, if that makes sense. So do forgive me for being a hypocrite. I know what I should do, I know what would help others as well... I'm just having a hard time adhering to it for the time being. Sorry.

Love,
Jo, who still feels quite unstable at the moment so isn't quite sure whether this is a good idea.

You have so much going on. I don't think you are a hypocrite. You are juggling so many things, for yourself and others. You are amazing! Sending hugs. You will be in my thoughts.

 

[TooSweetForMe]

Oh my goodness! It's really piled on you, hasn't it? I don't have anything helpful to say but just know you and your family are in my thoughts and prayers during this time. And you can always come on here to vent, let off steam, and get your fears and frustrations out of your head and heart.

 

[Robbity]

Jo, you have just put my feeling-very-sorry-for-myself-at-the-moment to shame. I don't have half so many issues to deal with just now as you have, so I need to revise my perspective a little. Thank you for posting...

 

[VashtiB]

Very nice to see you back @JoKalsbeek

I am another who does not believe you are a hypocrite. Please extend to yourself the same compassion I have seen you extend to others here.

You are amazing and juggling so much- a person is so much more than the physical. Every day we need to make the best decisions we can for our self- sometimes the emotional needs are far more important than the physical needs. Sometimes just trying to work out what you can do to meet the physical needs is too much and you just can't. That neither makes you a hypocrite nor a failure. I think their are very few people that don't stumble- I'm certainly not one of them.

You have so much on your plate and most of it is you prioritising those you love- that makes you an amazing person. You are tackling things like going grocery shopping despite your anxiety- that just shows a little about your courage and determination.

There is so much I wish I could say but I will limit it to saying- sending you virtual hugs as many as you can stand and you are definitely in my thoughts and prayers.

Take care of yourself!!!!

 

[Lamont D]

So, so sorry @JoKalsbeek.
I echo all of the words above and add my thoughts and prayers for you.

As @jjraak has said, you need help and you need to talk to someone who can help you. You at this time need as much help as is possible, it was hard when your partner was well, but you should not have to care for him and more importantly you.
It is very similar situation as on an aircraft when the plane is in trouble, the oxygen masks drop, and you are told to put yours on first before anyone else is struggling to do so. You can't look after anyone else while you are unable to really look after yourself!
I have had two years of counselling and I'm my wife's carer. But I do need to look after myself before I take care of my wife, it's harsh and difficult to do. But it is necessary.
I hope you understand my reasoning. And please do get the help you need whether physical or mental health.

My best wishes

 

[Goonergal]

It is very good to see you back @JoKalsbeek and I only wish the circumstances were different.

Please do be kind to yourself - it sounds like you’re doing an amazing job holding things together for others, so if you can, take some time for yourself. And don’t let perfection get in the way of taking small steps in the direction you want to go.

Please stick around too!

 

[Antje77]

Can I ask you to go back to what you wrote to lucylocket just a few hours ago And read it as written to yourself?

Please extend to yourself the same compassion I have seen you extend to others here.

@JoKalsbeek See? Told you so!

I was advised to just talk for a bit to you guys on here

And you were also advised that you're very welcome to come on the forum because you need our support.
Don't you dare feeling you're not doing good enough when you come here for you, with little room to help new members out.
You've done more than your share of that when you had that room (as proven by the many kind reactions to your long post by people who haven't forgotten you), everybody is more than willing to give back.

One of your amazing strengths is finding ways to still do things you enjoy even in the darkest times.
When Kornelis was at his worst (and you weren't that much better), trips to different cities had to be changed to visiting the neighbourhood cats on a bench no further than 100 meter from your home but you still did it! You never stopped making amazing photographs (and being overly critical of them).

With everything that has been thrown at you, you didn't hide away in a dark room and deep depression. Instead, you found some more strength to keep fighting and improving every time despite your stupid brain telling you you're not good enough like a stupid song stuck in your brain accompanying everything you do.

I wish for you to truly feel what a strong and wonderful person you are because you are.

 

[lovinglife]

Sending you much love, this forum is like a family and families carry each other in times of need. This is your safe place, we are here for you x

 

[JAT1]

Jo, I am so glad you are back. I always enjoyed your posts and found them so helpful. I'm so sorry for all you must suffer these days and pray you recover from the misery. The underlying spirit of great strength in your post is a powerful lesson for me.

 

[EllieM]

@JoKalsbeek not much to add here apart to agree with the outpouring of love and support from all the other posters.

I can only hope that we can give you even a fraction of the support that you have given to others in your time here. (I still find your blog one of the most helpful resources for new T2s anywhere).

I'm sure you are now overflowing with virtual hugs, but have some more from me in New Zealand.

 

[Pipp]

Can only add to the sentiments already expressed.
Take good care of yourself, because you are worth it.
Also remember, you are so well respected, here. Not just for the support you give. It works the other way, too.

 

[JoKalsbeek]

I don't know what to say. I'm short for time this morning, with strikes and the papers promising bad weather as well as we head out to my mom's oncology appointment. But I've been reading your comments, and for the first time in what seems like a long time, I allowed myself to just cry for a bit. (If something teary wells up I usually get rid of it right quick.). I needed that more than I thought I did. It took some of the pressure off, it seems.

Thank you. I've missed you, but thought I had nothing constructive to add anymore. Just felt so angry all the time, so lost. Thank you for shining a little light my way. Just... Thank you. I love you all.
Jo