Christians with MS Community Group
place where Christians with multiple sclerosis can come and make friends and talk. please no mean comments.
Just thought I would kick off with a different subject title. :)
I havent been to church as such for over 2 years now & thought of going again but just couldnt be bothered with it all. For me it isnt a matter of just getting up & going. as most of you would find when you get up you have to get moving LOL.
I dont drive anymore due to seizures that are apparently not epilepsy as no brain signals on eeg testing for 5 days though they videod the siezures & "blank outs" no activity on eeg (they could see a brain though). now just saying its due to ms.
I had a difficult 2010 with ms, seizures & testing, bowel problems ending in surgery which then got "hospital acquired infection & dbl pneumonia" so 6 weeks in hospital & about 3 months off work.
had lots of bladder tests done & tried self catherters & couldnt do it as bladder spasmed & then bled so now have a permanent supra-pubic catheter. It has made a huge improvement on quality of life, not always wearing big pads/pants & still having "accidents" & searching for the toilet but not getting there on time.
What has this got to do with faith???
Through all of this we have had support from a small group of close friends from Church & a lot of prayer support from a wider circle of church people. Had phone calls, messages, cards etc from people I hadnt heard from in a long time & all were thinking & praying for us. I didnt doubt that it had to get better & would.
Forward to this year, bowels & bladder both sorted out, some laxatives occasionaly instead of living on them daily. Have adapted to the catheter easier than I thought ot having issues.
I am still mananging to work 3 days a week part time, different duties that are less stressful.
We have refinanced our house so dont have the huge mortgage & bills, have help from a disability/government source so able to sort that out towards the end of the year. had renovations done so vinyl that looks like floorboards in main living area, carpet still in front lounge & bedrooms. Paths around the house so I can get out to the clothes line & shed with the walker. We have also got rid of a lot of "junk" with the tidy up needed so that is good.
I am waiting on getting an electric wheelchair which is government funded through a program to keep disabled people in the workforce. Hopefully it will be here before we go on holidays but we wont be taking it away.
All of these things were not in our future this time last year but with faith, patience & open minds & willingness to ask for help we have turned around our life. We have gone from being stressed, me struggling & sick & not getting any help to now getting help from a few different sources, still waiting on a government case manager to assist but on the "wait list" & we are managing much better. Yes I still have the issues of ms, allergies, hemiplegic migraines, excema etc etc but dealing with it differently & better I hope.
I am not going to church (also get migrained from the noise) but recently one of the ladies have been dropping over cd's/dvd's of the church service so I am actually getting fed that way too. A couple of ladies that I hadnt heard from have phoned & another sent a lovely card letting me know they are praying & thinking of us.
One of my sisters has contacted us & opened the communication & we have spent time with her & family Christmas eve & she has come over since to visit too.
I believe this year is going to be better. Not sticking head in sand, health issues are still going to be here but deal with them as they happen. I feel more positive & know that if God can carry me through the trials of last year then he has better things in store for us this year!
We are going on a holiday including a 23 night cruise from Australia to Bali, hong Kong, Taiwan, Japan & China which is a trip of a lifetime & I turn 50 on the cruise. We go on the cruise on 8th feb but will leave home on the 5th to spend time with a friend in Sydney for both of our 50's. It is a great way to start the year (well Feb).
Would love to hear how you are approaching this year 2011, if last year made you stronger or just a struggle & how your faith has grown or been challenged too.
I havent been to church as such for over 2 years now & thought of going again but just couldnt be bothered with it all. For me it isnt a matter of just getting up & going. as most of you would find when you get up you have to get moving LOL.
I dont drive anymore due to seizures that are apparently not epilepsy as no brain signals on eeg testing for 5 days though they videod the siezures & "blank outs" no activity on eeg (they could see a brain though). now just saying its due to ms.
I had a difficult 2010 with ms, seizures & testing, bowel problems ending in surgery which then got "hospital acquired infection & dbl pneumonia" so 6 weeks in hospital & about 3 months off work.
had lots of bladder tests done & tried self catherters & couldnt do it as bladder spasmed & then bled so now have a permanent supra-pubic catheter. It has made a huge improvement on quality of life, not always wearing big pads/pants & still having "accidents" & searching for the toilet but not getting there on time.
What has this got to do with faith???
Through all of this we have had support from a small group of close friends from Church & a lot of prayer support from a wider circle of church people. Had phone calls, messages, cards etc from people I hadnt heard from in a long time & all were thinking & praying for us. I didnt doubt that it had to get better & would.
Forward to this year, bowels & bladder both sorted out, some laxatives occasionaly instead of living on them daily. Have adapted to the catheter easier than I thought ot having issues.
I am still mananging to work 3 days a week part time, different duties that are less stressful.
We have refinanced our house so dont have the huge mortgage & bills, have help from a disability/government source so able to sort that out towards the end of the year. had renovations done so vinyl that looks like floorboards in main living area, carpet still in front lounge & bedrooms. Paths around the house so I can get out to the clothes line & shed with the walker. We have also got rid of a lot of "junk" with the tidy up needed so that is good.
I am waiting on getting an electric wheelchair which is government funded through a program to keep disabled people in the workforce. Hopefully it will be here before we go on holidays but we wont be taking it away.
All of these things were not in our future this time last year but with faith, patience & open minds & willingness to ask for help we have turned around our life. We have gone from being stressed, me struggling & sick & not getting any help to now getting help from a few different sources, still waiting on a government case manager to assist but on the "wait list" & we are managing much better. Yes I still have the issues of ms, allergies, hemiplegic migraines, excema etc etc but dealing with it differently & better I hope.
I am not going to church (also get migrained from the noise) but recently one of the ladies have been dropping over cd's/dvd's of the church service so I am actually getting fed that way too. A couple of ladies that I hadnt heard from have phoned & another sent a lovely card letting me know they are praying & thinking of us.
One of my sisters has contacted us & opened the communication & we have spent time with her & family Christmas eve & she has come over since to visit too.
I believe this year is going to be better. Not sticking head in sand, health issues are still going to be here but deal with them as they happen. I feel more positive & know that if God can carry me through the trials of last year then he has better things in store for us this year!
We are going on a holiday including a 23 night cruise from Australia to Bali, hong Kong, Taiwan, Japan & China which is a trip of a lifetime & I turn 50 on the cruise. We go on the cruise on 8th feb but will leave home on the 5th to spend time with a friend in Sydney for both of our 50's. It is a great way to start the year (well Feb).
Would love to hear how you are approaching this year 2011, if last year made you stronger or just a struggle & how your faith has grown or been challenged too.
I am so happy for your upcoming trip! What a delight it will be -- and the sights you will see! Truly, a trip of a lifetime!
Your question has had me thinking for several days. It will be a year at the end of the month since I was dx. My daughter was concerned I would be bitter, but I don't think I am.
I think I have withdrawn from a great many people. Our church is not the safe place I would wish it to be. Some of my life long friends there are busy with their lives and work, while I am at home and quite a distance away. It is not that I am angry about this--it is what it is...life. We live in a fallen world and we are experiencing, in a very real way, the results of the Fall.
Maybe I'm fooling myself, but I just live my life. It would be so nice to be one of those wise sages that people see as "having it all together"...but that's not me. One of my regrets is that my faith is not as "advanced" as I would like (that is probably not the word I want to use). What I mean is: good grief, I'm over 50, I should know more about scripture, doctrine and how it applies to my life!
I enjoy reading "The Valley of Vision". What a great devotional! It is a book of Puritan prayers. The old language is beautiful, yet understandable, and speaks to me on so many levels.
It will be interesting to see how God grows me this year. I know that He is in control of all things. He's got this one, too.
Glad you are not bitter. 1 year (& other) anniversary of being dx can sure be bittersweet, relief at knowing whats wrong & frustration at what the disease is doing to you & making changes etc.
Sorry, too hot here to concentrate & right eye dbl vision again so will try & answer another time.
Have you had support from other christian friends?
Have you been able to increase your faith or has it gone into a "stalemate" or has it been "fed" a lot.
For me I have probably lost a lot of my "active faith" I find myself thinking "as if" to a lot of things people say like, - all things are meant to try us, God wont give you more than you can handle etc.
People that never contact me & occasionaly phone or see me somewhere saying "I have been praying for you" really irritates me. " where is the active body of the church?
I know the church support a lady & her family who never even go to church, yet they didn't support a friend of mine who has been through the ringer with breast cancer - double masectomy & chemotherapy that made her very sick each time. She only had contact for 2 or 3 ladies that are good friends. Other than that nothing, no meals, no offers of taking her out or anything. It really stinks that they supported another lady heaps & yet my friend got nothing. She was still going to the church till she got too sick.
I still believe in God but I don't know if I believe in the Church as a body of family who share a faith & help each other when it is needed. I think it is very insular in that they help some & not others which is why a lot of people leave & "church shop" to try to find one that suits them.
There is a focus on outreach & getting new people to get involved etc. They let people who have been there & involved & then dont appear or have needs just go & struggle without any assistance. or contact. It really p's me off then they see you somewhere & start talking to you as if you are still a good friend etc.
We have had a variety of ups & downs this year - had a great cruise. Had issues with fatigue so on ship days relaxed & usually spent some time having a rest in our cabin or sitting in a nice area having coffee & chatting to others if we felt like it. It was a FANTASTIC cruise.
The only real health issue I had on the cruise was a blocked catheter & the medical area & dr's were fantastic. We had a spare of the sixe I use & after they had tried to unblock it & couldn't then replaced it. Of course it cost $ but thats what travel ins is for.
Sonce then life has had it's ups & downs. I wont go into it here. my latest rants are on main board, probably need search for now - if want to search under "kohlers" disease. Struggling with that & a few other issues like hubby is on work care, still going to work but with a back injury doing "light duties", For a truck driver to be in the office doing a variety of bits it is not what he is used to at all. This also means of course that his income is decreased a lot too as no overtime, meal money & only 38 hours a week instead of about 60. HUGE difference. Don't want $ support but people who cared enough to talk to us sometimes would be nice.
I also don't drive now so reliant on hubby or on taxis if too far for getting there by scooter. I have lost most of my "friends" & miss being able to do social things with the "ladies" ot the over 40's group. To me its a sad reflection on how shallow & "me focussed" people are. Its the same everywhere I think. Not only church people but others too.
Where does this leave my faith? I am still a Christian, I still believe in God & what the Bible says. I don't read it any more. I occasionaly read christian sites & I do read prayers or nice Boble verses people send. They can be challenging or uplifting. I can't defend the "Christian church" as a body that does good. If I went to a Church now it would be as a "visitor" & I would not become a member or involved in any way either I think. Sad reflection when I was studying Biblical studies to be a Pastoral carere/minister whatever I ended up. I was enjoying it & very challenged by it all too.
Where are others compared to beginning of year or last year?