For those of you who do not have family, who are trying to cope with RA and/or Fibro, my heart goes out to you. I have been realizing lately how I do not think I would have the will to live, without my family. Today my hubby got me up to go to the saltwater fish store so I could test my aquarium. I had made a commitment to more animals on Craigslist that had to be picked up today. I took my morning pills. We went to the bank and all of a sudden, out of the blue, the bank would not take Kelsey's SSI unless we got paperwork and came back and opened a separate account. That is when the rush started. It took more than an hour to get paperwork and then another hour at the bank. I needed my painpills but no time. Had to go pick up Colton and go to get anemones and fish. It took hours to get these out of seller's aquarium. They do not come cheap but I have no life. I spend my days staring at my aquarium. If I did not have my family and my aquarium and pets - I don't know what I would do. I live for them. After all these months of trying to be brave - I cannot handle my pain. You take away my painpills - I panic. I live to interact with my family and manage my pain. I try to do some thing every day to contribute to the family - but it is very little - maybe fold the clothes or sweep the floor. VERY LITTLE. What an existance - but the point is - I could not live like this if I did not have my family. They put up with a lot from me. MY life is RA and fibro. It has taken over. I feel and know, I am not as brave as so many of you. I NEED my family. I have no other interests. RA took that from me. My heart breaks for those of you who do it alone. I barely want to live the way things are but to catch a smile from one of my kids, a cuddle from my cats or dogs or a big hug and a hold me in bed from my hubby. I could not cope. POint is - I used to be a strong person - now I live for my family and entertain myself with a silly aquarium. Amazing - appreciate every good day you have. It can be all taken away. It was taken from me. It blows me away how many people who do not understand what a horrible disease this is. I am so proud of all of you that you handle it.
Roxy:
These are the anemones we saw last weekend at the beach when we were camping.
Oh Roxy, I still can feel the hurt and pain in your voice. But hopefully, as some of this awful stress peels away from your life, things will change and you will regain more joys. This is not as far as your life will go. You are still a strong woman just a bit worn for the wear of it all.
You keep up with the PT. You keep finding the little joys and one day I know I'm going to hear that you have found a way to make it outside in the woods again.
But I am glad that your family, fish and pets are bringing you comfort. I guess that's the cure for RA and FM, expensive saltwater fish. Well, I'm sure it costs a whole lot less than a shot of Enbrel or a trip to the ER. Yep, go for the fish.
I have little to no family support at all so Keep me in prayers.
My mom and brother have mentall Illness and that has caused our family to be fractured and seperate. My dad is cold and uncaring except about himself.
This condition causes alot of fear for the future for me as I don't know who I can count on It makes life hard for those of you with loving family's be glad I never got to experience that in life.. not once.
Pammy - I LOVE THE ANEMONES. I am still learning to keep them alive in my reef tank. I have done saltwater tanks before but this is the first time I have attempted a reef tank. I had a coral beauty fish, gorgeous fish, probably 3" across, that one of my anemones ate
Yesterday was horrible. I wanted to get out with my husband. Since my husband is an ex addict I don't usually take pills with me or I will put one in my pocket. Long story short, we were out and about six hours by the time we went to get the fish. We got there and Brett had to go get some containers. It was rush hour. The very nice people who were trying to show me how to care for my new critters and work the protein skimmer from them, I had to say, please don't tell me, I won't remember. I am in too much pain. Then the nice guy kept trying to tell me and I almost yelled at him - all I can do right now is try to cope with the pain - you will have to tell my husband. It was so wierd. I have never been that rude to people. It took Brett over an hour to get back. I was sitting in a chair with tears in my eyes and barely coping. I think stress had brought it on. We had a very hectic grouchy day but my God. I could not hold it together. I was so embarrassed. I could not walk and I could care less about my new critters.
I came home and everyone pitched in. I took a large dose of painkillers and Colton, Kelsey and Brett went to work setting up my aquarium. I felt bad as the aquarium is MY thing and the agreement was I take care of it. It made me realize how fragile I am.
Pammy, Those anemones are gorgeous. SOMEDAY .......... my tank will look like that. I have three tanks but it is the reef tank I like best. We rearranged the living room so I could have the couch right up against the aquarium. We are planning to go to the coast soon. When I am up to it
You are right Deanna. Life is hard. I have very little mobility. I missed my pt appt. as I pushed it too hard last appt. and that made me sad.
Mark, I am so sorry you do not have support. There was a long period that my hubby and I were on the edge of a divorce trying to adjust to my RA. Very scary time. If there is anyway you can get out to meet people, clubs, causes, volunteering. Try not to isolate. It is so bad for you - I know - that is what I tend to do. I know it is easier said than done, but try to create a chosen family, you don't have to have the same blood running through your veins. There are a lot of lonely people out there, you have to make the effort to get out and meet people. You love politics - there are lots of political groups likeminded as you that you could enjoy.
I am better today but I learned yesterday that it is fleeting. Stress can make you flare fast. That is what happened yesterday. No more going anywhere without a pain pill because once the pain takes over, it is almost impossible to get under control again.
I just pray - I can do some gardening this Spring. I miss the outdoors so much. I will pray for you too and all the others that have to do this alone. My heart breaks for Tara - she is in the same boat but has long distance family that is supportive. Mark - like me you are living in fear. I am learning more and more each day to live in the moment and be prepared to do anything I can to ward off a flare.
Sorry about the rant but the RA monster lurks and when it shows it's ugly head - we need a strategy to cope and remember - there will be better days.
Wow, Roxy, it sounds like you're in a hard place. I hope things get
better for you sooner than later (I know they will get better). Mark 1,
that sucks. I also have a selfish, unsupportive immediate family so I
can relate on that one. I'm lucky to have a very loving a supportive
boyfriend though. When you find that special loving and supportive
girlfriend, remember to love and support her back. I sympathise how hard
it must be to face this devil alone, though.
I was in a support group for my ADHD last year and I really liked it.
Have you considered finding a local AI support group. I think it can
help you feel not so alone with this. Good luck!
Mark1
Remember that those of us here are like family too. Some days, they have been the only support I have had. There is almost always someone on line and we are all just a mouse click away. I don't have a huge family and some don't "get" it. It can be very lonely and scary. Remember we are all going thru the same thing...we can be the best support systems =)
Lori
markl hang in there please, as Lori just wrote come in to the forum when you need some "attention" we all know what pain both physical and mental is difficult to wage alone....My husband is so kind to me that when I snap (so often at him) when the pain is at its worse, I could just cry at the look in his eyes....we've been married for 52 years, I pray that he keeps up the patience he needs to put up with me.....Prayers for you too Mark, take each day as it comes (listen to me giving advice) but we have to get by whatever is sent to us....
Rose
I know what you mean, Roxy. My husband is a big help to me and pretty understanding, but I need my kids. I miss hugging them, and how worried they get about me, and how special they make me feel. I've lived away from them for 6 years now and I truly believe it's one of the reasons I've gotten so sick. It wouldn't surprise me if some of my symtoms get better once I've moved close to them. Well, the depression will get better anyway.hugs roxy, i don't have family but do have my iguanas and mini horse to care for.i know they don't care that i'm in pain they just want fed .they are still my family and give me a reason to go on. mark sorry u don;'t have family to help u thru this either.i know what its like, but with the good folks here anmd all u can feel like family .Roxy - glad you have your mini zoo to focus on. Your posting was so sad Mark - can you tell us something about yourself, how old you are, whether you live in a city or in a country area, what your hobbies are etc and if you have good friends you can rely on - we can chose our friends but not our families unfortunately Hopefully you will be one of those who find their RA
Mark, you have to rebuild yourself a family. It has to be a friend here, maybe it's a cousin or an uncle. It's hard, but you can eventually do it. I'm really cut off from my family. Over time, I've been able to rebuild some of the bridges, but not all of them. And, basically, here at home, it's just me and my daughter. My son is in his own world of denial.
But I am always trying to reach out. And, sometimes people will totally amaze you. Those are the moments that I live for. Several people that I've met here are becoming like family to me. It's really nice because I don't have to explain my illness to any of them. Boy, does that take a load off right there.
Mark, I am so sorry you do not have the support you need. It has to be very hard. Mental illness is horrible disease. I feel for you. Family does not have ot be blood. We are a military family and have had to move every yr to three yrs. We have made friends which are better than family sometimes. We would spend holidays together and depend on each other for emergencies. We have moved to a new state and I do not have many friends here. There is family but they are not much help. I usually have to do the entertaining and holidays which is very hard and they do not get it. I hope you can find some good friends to share with. Keep coming here. This sight helps me a lot. Hugs. Cherie