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Hello Everyone
I don't have anywhere else to turn to other than here about my situation so I am hoping somebody might be able to offer some wise words.
I am struggling with IC and have done so for a good while now and am waiting to come out and see Matia; just to give a little background.
At the moment my head is all over the place emotionally since not only do I have this painful condition but I am raising two children under 3 and run my own little business.
I am never able to relax at all and find that as a result my coping mechanisms are beginning to fail. My husband was very supportive to start with but I now feel that my illness has become just the 'norm' now and that I am expected to do juggle everything despite the fact it is somewhat physically impossible. My husband tries to understand but it is difficult for him to do so I guess.
We haven't been married too long and I feel like our marriage is slowly crumbling away rather than making us stronger. I know this has a lot to do with me since I have changed profoundly since having this condition. I have seen the darkest depths of my soul and thought at times there was no return; I know now I have hope with Matia but the trouble is that I fear my relationship with my husband will never be exactly the same again and that saddens me because I do love him very much.
We argue constantly because I am always irritable due to having so much pain and no rest - I really try hard to be a better person when it comes to dealing with the pain because I know there are other ladies out there who have more severe cases of IC than me and still manage to lead productive lives. I am in admiration of them.
Sorry for the rant, but if anybody has any suggestions of what I could do to try and make things right, it would be a great help.
Many thanks for listening.
Poppy
x
Advice
I'm not sure of your situation. If you can get out to see Matia, do so as soon as possible. It is the the only way to recovery. If you have not already done so, start her diet now. Some people (like myself) saw immediate improvement when starting the diet, but it was only after seeing her and starting treatment that I really began to live again. My children were 3 & 7 when I came down with IC. I know first hand that little ones need so much of us. My symptoms were constant urgency/frequency. It's very hard for others (including close loved ones) to really understand what you are going through. Has your husband read any of the success stories? If not, I think it would help him understand better what you are feeling. Go and see Matia. You will never be sorry for making the journey. Tammy
Hi
Hi Hon
My heart really goes out to you. I remember when I first had ic and first started with Matia--how stressful it was on our marriage. My husband had to do just about everything. I was a pastor's wife at the time as well and really struggled to keep commitments, etc. I know how hard it is when you can't get rest or feel like no one understands or is in your corner. Your stress is even more compounded with having two young children and a business. I was wondering--is there a friend or family member who could step in at times and help a little--with housework, grocery shopping, babysitting--anything to help lighten the load a bit? I agree with the other response about having your husband read Matia's site and the success stories--to give him hope for your condition which may make it easier.
Is there any way to reduce stress and get the rest you need? Is is possible to take a temporary hiatus from your business? or shut it down for a while?
Also, I know you are frustrated with yourself for being irritable--I was too, hated myself for it -- but I learned that beating yourself up will only take the little bit of energy you've got left. Be kind to yourself, communicate your needs and limitations, and if you blow it, apologize and move on.
Honestly, I do not know how my husband and I made it through that time in the early stages of my ic, except by the grace and love of God. I am praying for you and your husband
icnot4me
Poppy
Just wanted to first say that I give you (and all moms w/ IC) so much credit, how you raise kids and work and all else with this disease is astounding... the very fact that you stay sane under such circumstances should be applauded. But back to marriage... I understand your predicament, as I've had major marital issues throughout this time as a result of my illness & this treatment.
One of your issues is that you're expected to do more than you can (or should)... If you haven't already, could you have a frank heart-to-heart with your husband? You may have spoken to him about this many times, but perhaps not in this way. Start with an embrace to soften the mood, touch him (i.e. on the arm) throughout to reinforce you are coming from a place of love not attack, and choose your words carefully.... try for "I" statements.... lay out what the problem is and what you need concretely to make things more manageable for you (men usually need specific action items rather than sitting down "just to talk").... no accusing / words that will get him to be defensive or shut down and defeat the purpose. Perhaps start with something like "I love you so much and honor all that you do for us, it kills me that this illness right now is putting a strain on us... I want to figure out a way to make things more manageable and loving for both of us...." Also, stress the temporary nature of things so he doesn't get freaked out that this will last forever, and to validate this, like others have said, encourage him to read the success stories.
For others who've never had real physical struggles, it's hard to comprehend what we're going through. And because it's an invisible illness, people can assume or even be certain you're capable of more than you are, and assume or be certain that you can't be in that much pain if you're smiling or doing x/y/z. (I encourage you to check out invisibleillnessweek.com - lots of resources there). There's also something my wise therapist suggested... I thought it would've been very valuable though my husband wouldn't do it, but perhaps yours would. Ask if for one day he'll put a very tight rubber band around his wrist and not take it off no matter what... just to get a flavor of what it is to live with constant pain/discomfort and how it even impacts you mentally and emotionally. And when it's over, remind him (nicely) how "you get to take it off, but for me, I can't."
Your other main concern is your irritability and the marital arguing/tension, plus you fear your relationship won't be the same again. Try to recognize that in a situation of extreme stress and pressures like this, you're not going to be your best self, and it's going to take a toll on ANY marriage. This wouldn't be a cake walk for anyone. And arguing isn't always "bad" per se .... it's healthier than repressing (and John Gottman writes some interesting stuff on all this). Certainly, though, it's a valid concern and not easily dealt with. If you have the means for emotional support and your husband will agree, I'd find an expert specializing in people with chronic pain/conditions. As far as fearing your relationship won't be the same again, frankly, it won't. After going through something like this, how could you or your husband be the same exact person? But that doesn't necessarily mean it will be worse. It does have the opportunity to be even better and stronger (Matia's done some great blogs on this in the past). Yes, some marriages have crumbled under the pressure, and who's to say all the contributing factors as each situation is unique, but it's a supreme test of a marriage. One key seems to be each partner's commitment and willingness to work on things. But as others mentioned, getting support is crucial, both practically and emotionally. On a practical level, do you have people in the community or church who could step up and help a bit? What's so sad is that had you been diagnosed with cancer, everyone would likely be rallying around you to help. But with this, no one knows or understands what the heck it is, and the degree both illness and treatment affect your life, and there's no outward visual cues to your pain or disablement, so a lot of us "suffer in silence," and it requires a lot more reaching out and explaining than how a cancer diagnosis would be instantly understood. If you're the type (like me & so many other ICers) that always help others but have a hard time asking for help themselves, try your best to reach out and ask anyway, because there's too much at stake, and the load of all this responsibility and pressure can only be carried on both your backs for so long. I want to stress overall, though, that there is much hope, and that Matia's path is the path to light and healing and living again, so this is a temporary phase, and one you can both get through with patience, love, teamwork and support.
ic hope- that is a wonderful
ic hope- that is a wonderful post!