How do you MAKE your spouse Understand **Systemic Sclerosis** an all the things it brings are *NOT your own fault!!!!

[8whitetoes]

My spouse blame's Me for having these horrible chronic illnesses.... He yells at me about $$$for Dr. appointment's ... Every single month I have to go see a DR... I started having *bladder spasms* - treated for UTI ... Turned out Not to be UTI !!! Just the *Weird Disease* (I also have fibromyalgia And hypothyroidism... And so many other strange things that go along with it all...) ... Now I have permanent BLADDER SPASMS !!! ( I go through more water than fish do )... very Sensitive Ears - Sight - Skin - (I'm alergic to the freaking false teeth ... Not surprising to me , I AM alergic to metal and Latex ...) ... But I have to depend on Him to drive me ... (Dr's don't want me to drive) ... So I catch Hell !!!! ... I'm lied too ..., **Because it's for my own good** I don't tell you about ******..... I do not like to be lied too!!! I'm sure I ain't the only one.... 5 time's to the ER by ambulance...- PNEUMONIA - kidney stones - **Shear EXHAUSTION** (from being bitched at, all the time) ... I'm having **panic attacks** ...(spouse is very passive agressive, and covert with abuse) .... I'm honest to God trapped .... (In my 50's ..., The older I get the WORSE , my health has got) ... I'm stressed out to the point ..., I want to hide under a rock , never be found again ...... I have lost 40 lbs ... Or more ..., I ain't sure if I weighed 100 lbs .... ANYMORE.... My service dog is bigger than me ..... Now... I finally got my spouse and myself in counseling .... 38 yrs is a long too just Trash... But I am so very tired .....

[fairy56]

Hello 8whitetoes, I am so sorry to hear that you having such a rotten time. The plus seems to be that you are going to go to counselling, this may help you, but hopefully will help your spouse to understand how you are feeling. You say he drives you to your appts, does he come into the consultation with you, take the time to ask the many questions that you want answers to, and as far as I know, no one knows why some people end up having this condition, please try to stay as positive as you are able to, you will never be alone on this site, sending you positive thoughts and love and hugs!! xx

[8whitetoes in reply to fairy56]

Thank you ...

[lennyplus4]

8whitetoes, many of use have a hard time explaining autoimmune issues to love ones. Personally, my family doesn’t believe I have an issue because they can’t see it.

It is good your spouse is willing to see a counselor, mine won’t go to any appointment for anything. I see a counselor & it helps knowing someone is listening plus hear a different perspective. Recently, my oldest asked to go to my next appointment so he can hear what is wrong & ask details. But my spouse is different, doesn’t believe I have health issues because he doesn’t see the problem & it’s all in my head.

I know it’s easy to say yet hard to be positive. Many prayers for strength. God speed.

[8whitetoes in reply to lennyplus4]

I hear this ALOT TOO .... """There's nothing wrong!!! With you !!!"""" ......

Thank you ......, **you can't see a head ache but people get them ** maybe when anyone complains about a *headache* ask them *prov it??? I cannot See anything Wrong**.....

[Angelicscripts6]

This is appalling

Hope counselling helps

[wednesday]

Not good for your health being constantly put down, you deserve better. Good luck with the counselling, maybe he will see what distress he is putting you through. I know it is difficult for them to get their head around this illness. Sending healing thoughts x

[Hidden]

This sounds to me like your husband is taking his frustration and confusion about your Illness out on you. I hope the counselling will help him to recognise this and come to terms with it so he can be more supportive. Your post made me very deeply sad for you. I hope things resolve as he is currently making you sicker, as I’m sure you’re aware. Xx

[Bec9680]

I’m so sorry to hear you’re going through all this! I understand, I also have systemic sclerosis and I know how bad it is! All the joint pain, fatigue, lungs scarred, & digestive problems that keep me up at night it’s awful! For the first 3 years I was felt lost with doctors telling me my only option was immosupressants. I finally gave in & started taking cellcept within 2 weeks had a horrible allergic reaction. I had joined another group online inspire.com kept hearing people talking about AP therapy. I just started this antibiotic treatment a couple months ago & im already seeing great improvements! I just wanted to share Incase it might work for you or anyone else on this website. Just google AP therapy or go to roadback.org

God bless

[bluesgirl]

I think you just have to shrug your shoulders and accept some people don’t know how to handle their loved ones being ill. I have a brother who is very intelligent, medically trained and yet when l was given a three to five year survival prognosis said to me ‘ everyone had got to due sometime’ I was very upset by this remark but can see his logic and l have since found out he just couldn’t deal with

his little sister’s early demise. I hope this was the case. Anyway ten years on l am still here!!

[Goldyukr]

I’m so sorry to hear what you’re dealing with. Chronic illness definitely puts severe stress on a mare sugar in more ways than one. It seems like a constant wave of re-evaluating and compromise. I’m not sure if we are allowed to do this but I found this article very helpful and practical for both the one with the illness and the caregiver (jw.org/en/publications/maga....

I hope you can find some peace since stress is terrible for autoimmune - or any illness.

[frillyhilly]

I'm so sorry to hear everything you are going through - I am very lucky that I have a husband and friends who understand. But I also have parents who think that every time my health team come up with a suggestion it is going to fix me - this was sort of ok when I was first diagnosed but not 15+ years later. I know it is so difficult, but try to hold onto the fact that this is most definitely not your fault.

You mention about overly sensitive hearing, etc. This happens to me. When it happens the slightest noise is painful and I just want the "world to go away". I was on 25mg of Amitryptiline, but back in spring the sensitivity was driving me mad again. I spoke to my GP and she increased the dose - it has significantly reduced the problem. My understanding is that I have "Peripheral neuropathy" - so perhaps it is worth talking to your GP and see if you could try Amitryptyline or a similar medicine.

I hope that the counselling helps.

[8whitetoes in reply to frillyhilly]

I have recently learned that **I AM Having vertigo!!!! .... My daughter figured it out!!!!! That HEAVEN'S she is a Paramedic.... I was on the floor playing with the Grangirl, I said ""CRAP!!! WTW!!!! The Room is Moving????!!!!"""" She's said be still..., Now lets get up slowly, ..., Mom you're experiencing vertigo....""""

[avtargill31]

I'm gobsmacked that your partner isn't willing to listen or help etc. I'd compare your body like a car, you jump in, turn the key and drive. If it breaks down, you don't know why it's broken down, you just call the mechanics. Your body is the same, you use it all the time, it fails and you see a doctor. How can that be your fault? It's like when they say about mental illness and there's no such thing. Again, compare it to a car's engine management system, if the ems develops a fault you take it in to be rest and sometime it can't be reset. Exactly the same as the mind, sometimes it misfires and sometimes it can't reset without help. Without being rude, I think your husband needs help or just grow up. If it was happening to them, they would be fast in their asking for understanding. Sorry for the rant but shocked, really shocked. Hope it works out the way you want it to.

[Ncoff]

It’s so hard for family to understand I also feel my family are fed up of hearing me say I’m tired or don’t feel well to the point I stop talking about it as I don’t want to get on there nerves. I guess it’s stressful for family seeing you suffer and are helpless in ways to help and understand. Counselling is a gud thing and hopefully will help you both through it.