Big virtual hug!!
Hello, I am a psoariatic/fibro struggler myself. Some days it feels like I have been hit by a truck. But now to your question. No my spouse really doesn’t get it at all. I try not to hold it against her. I mean how could she truly know what it feels like it or even relate to it?
My tablet was acting up hence part 2 of my reply. Spouse not getting it. I find that people in general do not understand much about living with a disease such as this unless they have it or another overwhelming continuing relentless Disease. It Is invisible and people cannot see or feel it due to the slow degradation under the skin. Taking New Biologics is promising-cosentyx But i find myself just managing and hardly holding A job. Currently In a flare And taking prednisone. Point being the disease Is unfathomable To the extent It wrecks you. I do not believe people choose not To keep It on their mind. Its just that a normal person cannot continually relate to something That is with us 24/7.
Thank you, Nermada. I’m not sure it’s the PsA that’s getting worse. Deep down I’m worried it’s something else, the Myasthenia Gravis that I’m still waiting for more tests. When my eye droops and I get blurred and double vision, and then on top of it my legs get weak from walking very short distances–I worry that my situation is getting worse, and fast, and MG has a whole range of symptoms and problems on top of PsA and on top of having heart disease. It would be so hard for me to accept not being the person–mom–grandma–that could do everything! My daughters keep telling me I have to slow down, but that’s not who I am!!! It’s hard to have in the back of my mind the prospect of being needy. I’m worrying way too much about it.
I’ve even gone so far as stopping my beta blocker a couple days ago because I read it can cause depression and it can be linked with MG. I stopped my statin 2 weeks ago at my primary care doctor’s request because she thinks it could have something to do with my painful feet and weakness. So, now I can worry about my heart and arteries clogging up again! I do think stopping the beta blocker may already be making a difference in how I feel emotionally, though.
Thank you, Cynthia! That’s so sweet!
Grandma_J , how did your appointment go? I hope they were at least able to come up with a plan to put your mind at ease.
Yes @Grandma_J. How did your appointment go? Over the last few weeks, I’ve virtually seen your increased anxiety and worry hop off the laptop. I so hope it’s feeling more manageable for you. You’ve been on my mind.
Sort off. We’re in the process of booking a holiday next year, back on a boat on the Norfolk Broads with the dog for a week. A holiday that I just love given all the wildlife stuff you can see and get close to. We’ve chosen the same boat the last two times and Alan wants a change. Nothing wrong with that. But what does he want to choose? A boat with steps all over the place, as in down three steps to the kitchen, up a step to the fridge, (he does no cooking) down another three steps to the bedrooms etc, up several steps to the upper driving postion etc etc. Incidentally these boats aren’t as big as it sounds, maybe 35 feet long and you just motor along at 4mph. So I looked at him (today was a bad day!) and said ‘really?’ So he says ‘oh silly me, I forgot we need one that takes a wheelchair and a scooter so all the same level!’. Sigh… I don’t need a wheelchair or a scooter yet. Have needed both with a fractured pelvis this summer - supermarket supplied scooter though, just for the supermarket, and wheelchair for when crutches got too exhausting. But really? So of course I smiled, pretended to thump him one, but today is a bad day and sometimes one just doesn’t need to be reminded quite so graphically of the issues one can face. Nor indeed what I worry my future might be like when I give up or can’t be so doggedly determined anymore. Poo.
We don’t live together. Thankfully. But when he went home, sadly I cried. Today was just a bad day. So no one gets it really do they? Unless they suffer this too.
My husband and I have been together for 26 years, so since I was 15! 13 of those years, we have also worked together, still do!!! The only reprieve I have is 4-5 hours, since I leave work earlier than he does.
He has the same sense of humor your Alan seems to have. He thinks it’s sooo funny when he cracks a joke at my expense, and I suppose I confuse him, when sometimes I laugh and other times I get offended. Well, I usually have a good sense of humor, but sometimes it just hurts too much or he takes it too far!
I don’t know, I feel it’s not too much for them to have a little bit of compassion and the same amount of common sense and understanding most of the time. Just a little bit! But I do get how hard it is for someone to really understand what we go through, unless they go through it themselves, which I absolutely would never wish.
Interestingly enough, a while ago Excedrin had a commercial displaying goggles that made whoever wore them experience some of what migraine sufferers go through. I thought that was so great, if only there would be something that could give people a glimpse into autoimmune diseases, even for a few minutes!
And for every patient who wonders if their partner - friends-family gets it, there is three someones who care about that person who wonders if the patient gets it. I’m not even sure what “gets it means”
Now granted I have two 18 year old grands living with me one with neurological issues as well PsA, and the other with lupus who constantly tell me I don’t get it (while I get frustrated they don’t get it when dealing with me) Experience with “it” doesn’t make it better
But then we raised 10 others who were in their 30s and 40’s before they figured out all those tantrums growing up accusing us of not getting it were wrong, we really did get it.
You might be surprised just how much your partner does “get it” and how aware they are that life goes on despite it. Of course I am aware what my two grandaughters are going through , but that doesn’t mean I give into them when they shoot “You don’t get it” at me (about 19 times a week)
I thank god everyday when my wife doesn’t give into my disease issue of the day. She knows I’m tired hurting etc but also knows if I’m not moving forward I can only move backward. And just when I think she doesn’t get it I catch her in the background telling one of the girls "if you bother Grandpa, your cell phone will look like godzilla sneezed on the screen (supposedly out of my hearing of course.
Hey Woodworm and Poo, thanks for asking!
I just got home from the appointment. My primary care doctor is amazing…she spent over an hour with me on a half-hour time slot.
She has determined that I definitely can never take another statin. Both Lipitor and Crestor gave me problems, and she’s convinced that my depression and some of the pain and weakness I’m experiencing in my feet and legs is caused by the Crestor. Especially since the depression had started last fall, a couple months after my heart episode and starting Crestor. She doesn’t think the beta blocker has anything to do with my pain/depression and she told me my cardiologist would be very upset with me if he found out I haven’t taken it for a few days…so I’m going back on that immediately! She mentioned that it’s very common for people after having a heart attack to get depressed…I didn’t actually have a heart attack, but it was close and she thinks that could be part of it.
We decided, since I took Nortriptyline for neuropathy awhile back and it calmed my anxiety down at the same time, she’s going to prescribe Nortriptyline for my anxiety/depression, but in a small dose like I took for neuropathy. She said it could somewhat help relieve some of my pain, too. Guess what! She checked my CPK number and it’s way up again–just like it was before I went on Enbrel! She said it was probably even higher while I was still taking Crestor (she did the lab 2 weeks after I stopped Crestor). Another really weird thing…I asked her when I took the Nortriptyline…I guessed 4 years ago–the year before I went on Enbrel. This is unreal–how time flies and I lose track of time–I took it from April 2009 until September 2010!!! 7-8 years ago!!! That’s nuts! I couldn’t believe it–I think I lost some years somewhere!
Other things we talked about: I’m getting a second opinion on my feet, I’m going to ENT about my ears ringing and she again told me to try Lipoflavinoids, but I’ve heard they don’t work. I guess I’ll give them a try. She’s also setting up a follow-up with the eye specialist for more extensive tests for my vision. She said she’s only seen one patient with Myasthenia Gravis in her 25+ years of practice, and she thinks it’s good the blood test is negative (even though I told her it’s one of those tests that’s 50% accurate). I’m trying to remain optimistic.
She was so nice. I said I think I’m just being a big baby. She told me I’ve had a lot of things happen in the past several years and that stuff can get you down. I’m pretty sure, though, and she thinks so, too, Crestor is part of the problem, as that is a SE some of her patients have had.
Haha I asked her what my cardiologist will say that she took me off the Crestor. She said (she’s an Internal Medicine doc) she looks out for my overall health, and she needs to make sure the meds I take are okay for me…she’s thinking about putting me on Zetia (sp), which isn’t a statin, but she wants to wait a month. She said Zetia can also have SEs similar to Crestor and she wants to see how I do for a few weeks on nothing. My cholesterol did go up 100 points from not taking Crestor for two weeks!!!
Sorry for all the boring details…I hope some of the things I talk about are useful information for others here who have similar issues.
Well Grandma J she sure sounds like a truly lovely doctor! I’m so glad for you. I so hope things just settle down much better for you really soon. I am though one of those who doesn’t think statins work for everyone in the manner they’re now prescribed. Indeed the manner in how they’re prescibed presently scares me.
What a very thorough appointment Grandma_J. It’s interesting what she had to say about a possible connection between your heart problem and depression. There could be some reason why the heart has long been thought of as the source of emotions across cultures, even if we don’t see it that way today. And more prosaically, that was a traumatic event for you, the after effects must run deep.
We don’t necessarily recognise the emotional impact of health problems. I ‘only’ have PsA and in a way, seeing as it’s well-controlled, the word ‘only’ does kind of fit right now. But it does impact on me. And, getting back to your discussion Nermada (sorry for the detour), this is one area that my husband probably doesn’t understand. However mainly that’s because I don’t understand it either. If the emotional side of things became more constant and persistent I would try harder to understand & also to seek understanding.
As one of the relatively few people (not in the USA, please note) who decides whether a private medical insurance company has dealt with your claim fairly, before you think legal proceedings should be had, I will just say this. Loads of people with cardiac issues suffer huge and horrible stress as a result of their cardiac issue. Just loads. It’s perfectly normal to do so too. It’s a recognised consequence in the first world, actually. Sadly too.
So @Grandma_J please just digest that fully. Really. Please. You’re not over anxious, you’re not just silly. You are actually just as most of us would be like too.
For the rest of you, in insurance speak it’s called ‘cardiac neurosis’. Exceptionally common and utterly normal. It of course varies in its intensity but it’s recognised. Legally if nothing else.
So now take a really deep breath Grandma_J and just know you’re perfectly and wonderfully normal, I would guess. Just like the rest of us.
Caridiac problems and depression often, and far too much, go hand in hand. So does PsA. Sigh…
I’m so bad with the written word–my thought/hand coordination isn’t superb, but I somehow want to let you guys know how very much you are appreciated!!! And, because I did sort of highjack your discussion, Nermada, I want to say that, even if our loved ones at home don’t “get it”, we know we can come here and everybody gets it!!! I don’t know what I’d do without this support group because each one of you individually is more knowledgeable and more understanding than all of my family and friends put together! And, they’re not bad people or anything. For me, it’s really hard to talk to them about my “stuff”, so it’s probably part my fault, and some of you probably feel the same–it’s hard to tell people, “oh my feet hurt so much today” or “these ears ringing is going to drive me nuts” or “my chest hurts, what if it’s my heart–or maybe it’s PsA in my ribs”–you guys all understand these worries because our symptoms are pretty similar, but if a person doesn’t have these same types of problems, or no health problems at all ( now wouldn’t that be wonderful?) they’d be very special if they could relate. And, some of them can. Like my doctor yesterday–she really seemed to understand and know just what to say. It was a far cry from the attitude I got at my last rheumy and foot doctor appointments.
But, anyway, I’m glad I feel like something is happening. One of my daughters read about statins and told me it can take up to six months (the doctor had told me two months) before the damage is undone. I’m hoping and praying the statin is the culprit…it’s always nice to pinpoint the problem and fix it! And, I think I’ll feel better taking Nortriptyline, too. Side note: my daughters are concerned, two of them threatened to accompany me to the appointment!
That is interesting and sheds a lot of light on why I’ve been feeling so weird this past year!
Just please have more hugs from me Grandma_J. You’re not neurotic either. At all. What you are feeling is just perfectly normal. Jeez isn’t enough we all have PsA? Sorry if I made you feel overly reactive. You’re not at all. Just not whatever, at all. Your concern given your cardiac issues in addition are just normal, Seriously. More hugs.
*joins in on the hugging @Grandma_J *
Yes Grandma J, in fact given what you’ve been through you should consider yourself positively laid back (an Aus phrase for not much phases you) and I’ll pile on with the hugs too
Nope, wife doesn’t get it. But, I have been in some level of pain since 2004 from a car wreck and 4 neck surgeries. I think she cares, but is just tired of me being in pain and no longer has any empathy.
People just don’t understand this disease. I have trouble making people understand I can go to bed fine but wake up and can’t walk. They seem to think that since I am not screaming in pain it can’t be that bad. Everyone is right, the chronic fatigue may be worse than the pain.
Doc prescribed my 5 mg oxycodone for when my hips and back hurt so bad I can’t walk. That is all I ask him for. I have a brother that takes 15mg oxy 4 times a day for chronic pain so he thinks I’m not in bad shape. I have a high tolerance for pain, too high the docs says. So, when someone ask about my pain it always turns into a competion. They want to convince me they hurt worse. I get very tired of it.
Wife just seems to think I must not be in that bad of shape. She had shoulder surgery 2 months ago and I know she was in pain. But she wanted a lot of sympathy from me and I had a hard time feeling for her because she doesn’t seem to have any for me.
I will be the first to never try and determine who’s pain is the worse because we all have different levels of tolerance and everyone processes pain differently.
Five weeks ago I broke my ankle because my tender right knee buckled going down the stairs and twisted and broke my left ankle. When I walked into the clinic the doc wanted to know how I was walking on it. I told her because I had to.
We do what we have to do, but it would be nice if other people would have some feelings for me everyone once in a while.
I’m getting to the point I am about ready to take my retirement and move to Costa Rica and leave everyone behind.
I totally get what you’re saying!! The squeaky wheel gets the grease unfortunately! !!
At least, we all get it here! It’s very disheartening when your partner doesn’t have a lot of sympathy, but as @Woodworm pointed out, it’s hard for people to understand it unless they go through it.
I’m sorry you’re feeling unheard and unappreciated at the moment and hope things get better for you soon!
Maybe if she read more abut it she would? How long ago have you been diagnosed? Hopefully, she can understand better given more time.
I really do hope you get to a better place soon, it truly sucks , when you have to go through this feeling all alone.