Feeling Stuck.

[Clairefmartin]

So tomorrow will mark 15 months indoors for me except for long hospital stays and doctor visits. I still start to pass out within 60-90 seconds of standing (apprently due to the extreme pooling in my right leg?). My local docs are all unable to see me for follow ups for weeks/months, and Vandi can't see me until late July.

I'm trying to stay busy - of course caring for my 6 month old from a bed and reclined wheelchair on good days uses up most of my energy, but I've been writing a lot and doing activism stuff. I even started some small crafts that don't turn me into a lifeless shaking blob after 20 minutes.

That is the big dofference for me - I am so deconditioned and exercise intolerant, that if I am even on the phone for more than 20 minutes my lungs hurt and I needs to recover. I am in bed 80-90% of the day. I'm just over it. Just had to vent. It's a bit overwhelming at times - I usually am an upbeat person and have coped well (n my opinion) but just waiting around for a doctor to do something to fix this is getting old. Especially since my baby is getting bigger and moving around and I'm having a harder time.

On a good note, I got approved in under 30 days for SSD, I'm thinking about convincing my husband that I need more paid help with that money until my folks relocate down here to help. I can't do any type of PT really becasue I crash and can't care for the baby while my husband is gone, so I need an extra set of hands to start really getting reconditioned.

This is why I'm so passionate about awareness/education/reserach, if there were more darn doctors and research centers, we all wouldnt have to wait so long for Vandy and Mayo. Its so frustrating!

Ok, I'm done.

[issie]

So sorry, you're having such a rough time. It does sound like you have your hands very full - a baby and extreme POTS issues. I feel for you. I hope that your hubby will agree for the needed help. Sometimes, it's just necessary! With being bed bound and not very mobile it does start to wear on your psyche. That's what is so great about this forum - we can come here to vent and we know we will be understood. Know that you're being thought of and hoping that your answers will be just around the corner.

Issie

[Rachel]

Hi Claire,

I'm sorry. It must be so hard being stuck indoors all the time. You have had such a difficult 15 months.

Congratulations on the SSDI approval. That's great that it went through so quickly! I'm sorry you need it, but I'm glad that help is there for you. I hope that you'll be able to find the in-home help that you need while waiting for your parents to relocate.

That's good that you are still trying to keep your hands and your mind busy. I hope that in time you will see small steps of improvement from doing these activities.

Best wishes for better days,

Rachel

[puppylove]

I'm really sorry your not doing well now. You encouraged me so much with the school stuff- It makes me sad to hear how miserable you sound. I hope your doctor gets back to you soon so you can feel better!

[Clairefmartin]

Thanks all - I had a rough day caring for the baby and think it tipped me over the edge a bit. I appreciate the support

[roxie]

Im so sorry cfmartin. I know how hard it is. I go through times like this as well....like just the other day. 

I'm glad you were approved for SSD and hope that you can get the help that you need. 

As far as pt, can you try simple exercises in bed? Just a leg lift every so often and then a few days later 2 leg lifts. Or isometrics. Start super small and gradually add.

You are so strong and I know you can get through this, just by the fact that you're still taking care of your baby AND doing other things.  

What kinds of crafts have you been doing?

Allow yourself to feel your pain and then reassess and go forward. I think we all need those times to just let if all out. It seems to reset us.

[roxie]

Have you ever tried some slow, deep, diaghragmatic breathing?

It may help calm, relax, and help you feel slightly better in some ways

[Clairefmartin]

Thanks Bananas! I do breathing eercises A LOT They help. I just want back out into the world. I want to take my baby to the park and got to my sons birthday party (I styped in, which was nice). I want to not need 5-7 days to recover from a 3 hours family visit. I struggle with being very type A and stuck in this body not able to go go go - and my mind is racing with ideas and fun stuff and all these dreams and goals and they are looking less and less attainable.

I hate sounding whiney, woe is me - I just think I'm constantly mourning and not able to accept that this is my life now. I HAVE to get better.

Oh - and I am painting again in small bursts. My first painting is an abstract peacock And I am painting these little peg people as well (I'm a super nerd), start wars and harry potter characters I say they are for my son, but not so much! They are totally for me.

[roxie]

My mind races with a lot of ideas, too.

When I focus on the fact that I can't do them I get sad.

I've been trying lately to keep track of every little increae and improvement I have, taking time to be thankful and feel proud. So I feel like I'm doing something. Its so easy to forget how much we do because it doesn't keep up with other.

I saw a picture with a cat lying on the floor and it said "I may look like I'm doing nothing but on a cellular level I'm very busy."

That's us potsies

[we_don't_look_sick]

I haven't had mast tests of any kind; but it sounds like something I need to try.

Have you had your hydroxy vit D tested? I am much worse when mine is low.

[HopeSprings]

Would some sort of physical therapy or cardiac rehab be an option? Obviously it would have to be with someone who understands dysautonomia and would know what to do with you. I don't know - just a thought. This is really rough- I feel for you.

[Clairefmartin]

Naomi - I'm doing PT, but I crash so hard from it and take a fews days to recover I really cant do it while having to care for my baby (alone) for 10 hours. Its a frustrating situation. My parents are moving down in a few months, I hope things improve then, because I'll be able to push harder without fear of endangering my child. Thank you though

[brethor9]

Claire.....hang in there!!...just keep taking baby steps! I am like you huge type A personality also and after 4 years I am still trying to get used to the idea that I cannot just jump up and go do what I want to do. Some days are better than others......like you, for me the hardest part is to not be available in the way I want for my autistic son....this illness gets in the way of so much! I want to be healed yesterday!!! (I have been my own worst enemy lol!) I have also been at the bedridden point which is like torture for us go-getters....for 6 months I thought it would never end but it did get better with time, rest, cutting out as much stressors as you can, trying different medications, getting MCAD under control..... eventually little changes start happening and you realize your body is slowly getting better....I now know there are no guarantees with this illness as to if it will ever fully go into remission and I will be my "Normal" self from days of yore....all I ask for now is for it to stabalize. The most important thing I realized too was that I hadnt gone through a grieving process for the life I no longer live until just recently....I think thats what finally made me able to come to some sort of reconciliation with this illness.....to be able to move on and accept whatever this new phase of my life is going to be.....you are strong Claire and you will get through this.....sending strength your way..... Hugs

Bren

[HopeSprings]

I'm sorry Claire - I missed that part of your post earlier. I see it now. I hope your parents will be able to help. I understand about doing it alone and about being careful not to make things worse. We can try all sorts of things when it's just us, but not when there are children to take care of. I have no family nearby either - I get it. Love your blog by the way - that is a very productive activity - helps spread awareness!

[jenglynn]

Claire...

I just read this post and am so sorry. I too am bedridden for most of the day, but I don't have a 6 month old. I can't even imagine how all of you manage with babies or toddlers. While I do have 6 kids... The youngest is about to turn 9 and our oldest is close to 16. In many ways, they are super helpful. We are blessed to have loving kids who are pretty compassionate toward their Mommy so I have more nurses and Mother Hens than I know what to do with at times.

I wish I had some words of wisdom but I really don't. In fact, I just posted almost the exact same thing last week. I am a Type A personality and would have never imagined living like this. I wasn't sure how I could possibly be confined to bed and stay sane. I'm working on my Masters and that's always kept me busy- but even though it about killed me, I had to make the decision to take this semester off. Due to so much syncope, I've had 9+ concussions and have suffered quite a bit of cognitive dysfunction. I really needed to let my brain and body heal, but it left a gap. I'm always amazed, but somehow, I keep myself busy everyday and try to be as positive as I can.. But sometimes for sure I feel I will snap because I want my life back so badly. I feel as if I'm letting my family down because as I lie in bed, they are living their lives and I'm missing a lot.

It is good news you were approved for SSDI so quickly. I'm not sure if you said where you live, but in my state (WI) there is a program called Wisconsin Cares- and they provide assistance with medical care, child care, home therapies, housecleaning, transportation, nursing, etc. If you are eligible for SSDI then you qualify for this I believe. I'm still waiting to hear about my SSDI application but I am getting Long Term Disability thru my employer.

Hang in there. I know what you mean- you try to stay positive but sometimes it is hard to keep a sunny disposition when hours turn into days, days to weeks, weeks to months etc... Without any answers or improvement. I think that your activism and trying to raise awareness is HUGELY productive and you are helping SO many people... That is wonderful!!!!!

Jen

[Clairefmartin]

Thanks Jen, Bren, and Naomi

It helps knowing I am not alone. It seems a lot of us were type A

I was back in the ER today, and got some fluids - feel more hydrated, but still shaky, exhausted, and in pain (my right side is killing me, and my liver levels are up - I'm calling doc tomorrow). I hated coming home on a stretcher, and I guess its good my son no longer gets upset, he high fives me on the way back inside The med transport people think its cute (and so do I!). I hate being away from them and my poor husband has to do everything. I feel like I'm dragging us down, and depriving them all of the life they deserve. But I do see a new doc this month, so I am trying to keep up hope.

Anyways, sorry for the whining, and thanks again for the support!

[jenglynn]

Sorry you were back in the ER and please don't ever apologize for "whining!!" that's what we are here for- to support one another.

Did you find it almost a mixed blessing watching your children become adapted to your condition? I have struggled with the thought of what my kids have seen, gone through and adapted to with my frequent hospitalizations, syncope and especially head traumas that have happened at home. At first, when I would faint without injury, everyone would just panic I guess. I joke now that they are so used to it they practically just step over me and wait for me to wake up (when I hit my head and there is blood, that's always a different story but we've made a lot of adjustments and that has not happened in some time, but my time standing is so limited before syncope that I just can't risk any more head injuries- and I'm so sick now- I'm in bed or crawling). I struggle with the fact that this has become "normal" life for my kids. These aren't things they should have to worry about

Jen

[stacdliw]

I have recently subscribed to a WebMD blog called "A Different Normal: Living With A Chronic Condition" I subscribed because for the past year I have been suffering with a moderate/severe idiopathic upper epigastric pain disorder right under my sternum that is brought on my drinking liquids. In most instances, the pain first occurs within 2 hours of me awakening and can last up to 2 hours, despite 20mg of oxycodone. After the pain has subsided, minor pain still exists and intensifies if I stand. In most instances, the pain will return within 5-6 hours and the routine will repeat itself, leaving me exhausted. During the past 6 weeks, I was able to leave the house once unescorted. So, like you, I am housebound and often get depressed.

Normally an upbeat person, this pain disorder has tested my postive attitude despite withstanding longstanding battles with Chronic Fatigue, fibromyalgia, gastroparesis and POTS. I must say that I do not know how you are managing raising a young child with the health chanllenges you face daily. I admire your devotion to child and your determination to overcome your challenges.

Luckily, my children are no longer living at home and we are fiancially secure. I 100% concur with your decision to use your Social Security monies to help with childcare. You MUST do whatever it takes to help yourself! Taking care of young children is one of the hardest things you can do, so please hire some help so that you can get the rest that your body needs.

For the first time in my life, I am seeing a therapist to help me deal with not only the physical, but also the social and emotional effects of my health conditions. I know that you are unable to physically leave the house, but I wonder if there is a counselor in your area who would be willing to conduct therapy sessions over the phone. I am seeing a counselor who deals with clients with health issues which is an exta bonus. Seeing a counselor has been great, if for nothing else, just to have someone objective just to listen to you, really listen to you. Sometimes I just gripe for 60 straight minutes and that's what I need-- who else would listen to me complain for that long!

Below is a link to a blog from A Different Normal in which readers provided suggestions on how they dealt with their depression/feelings of helplessness concerning their illness and feelings of isolation. The blog is pain oriented, but the suggestions provided can be applied to anyone dealing with a chronic illness. I found several new tips that I plan to add to my regimen. Hope you find something that helps. Just remember: Never, ever give up. Even though it may not seem like it, your body is fighting to live. As long as you are alive, there is hope. And never forget, your family loves you and needs you. You may feel like you want to give up and withdraw from everything, but without you, your family would lose an important part of their life. That is what has kept me going for the past 17 years-- I continue to smile, laugh and be grateful that I can still be apart of my fabulous family who loves me more than I love myself!

http://blogs.webmd.com/chronic-conditions/2012/03/how-to-find-smiles.html?ecd=wnl_nal_cpb_031412