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Back To The Bed...


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Well, I've been bed bound for the past week. On the 17th, I lost my mom, and we expected that while I wasn't out making the arrangements with the funeral home and such (I was in charge of the service, making travel arrangements, and things I could arrange with phone calls and emails), the stress of everything was gonna make me crash a fair bit. But, I have my IV fluids, my meds, and did my best at keeping my feet up and resting when I could ( which wasn't much sadly). I had two days out of the house for the viewing and funeral, then the next day at the threat of hospitalization by my therapist (I already hadn't been sleeping, but I wasn't getting even a nap in anymore, he was going to admit me and medicate me), I hung out in bed with my feet up and Netflix.

Last Sunday, I apparently had some major issues. I went to church, where I apparently wasn't acting right (we think I was having mini-seizures, but kept chalking it up as I needed more rest), so instead of helping with the media, I laid down in the youth room and slept. Ate lunch and went to the store, decided to start my IVs for the then instead if waiting until Monday... According to my housemates, they found me in the floor in the bathroom, and couldn't wake me. The moment I started to come around and they tried to move me, I would seize. They got me into bed, and minus a doctors appointment to get some X-rays and pain medication for dislocating both of my hips, I've been in bed.

This is reminisce of a year ago, when I was bed bound. Due to my hips being sensitive, they have been helping me to the bathroom and back, cooking/picking up food for me, and tonight, after much debate, helped me "wash" (it was that no rinse stuff) my hair and get my IV going, since I'm extremely dehydrated, and still trying to avoid a hospital. We've realized, even though I'm fully medicated, my feet being down for 15-20 minutes, I'm passing out and if they don't get me laying down soon enough, I'm way out of it, and have had more seizures, and those take more energy out of me. I guess in a way they are good, because they make me sleep, and sleep is something I really need.

It's like I'm back at the beginning. I've made all these strides forward, learning how to manage things with this condition, and now, even getting to the bathroom and back has my heart soaring to 170 and higher in just those few minutes sitting down with feet down. Even when I'm laying here propped up in bed, I've watched my hr go to 150. It's like my body is having this major hissy fit, and I am so clueless as to how to work through this. I keep wanting a timeline, like this day or this date range, I will be better than I am now, I've gotten up once today, when I started my IV, did my hair, and used the rest room (yeah, just once... That alone freaked my housemates out today, but I was also afraid to get up while they were gone, lest problems arise, their tile floor is really hard). It was excruciating, not just the pain in my legs from my hips, but just the onslaught of symptoms. The dizziness, the shortness of breath, the racing heart rate, the lightheartedness, just all too much.

I'm just ranting, as I know some here understand how this feels. I have things to keep me busy while I lay here, but mainly I need sleep. Even with about three things that have drowsy as a side effect, I'm still awake until 6 am, and only then I get about an hour. Maybe all of the symptoms I face everyday are magnified because I'm mourning (I've always been the one that everyone expects to have it together, and then fall apart later), maybe the months of insomnia and such, have left me in a more severe crash than I've had before (the fluids help though, thank goodness for the PICC line).

How do you make yourself rest before you get to a crash? The seizures are a blessing, because they do make me sleep, but it's not a restful sleep... It's a "just laying here still" sleep. I guess still is better than my deep desire to keep going like crazy.

Thanks for letting me rant. Off to take meds again, and try to sleep.

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I am sorry to hear that your mom passed, I'd give you a hug if possible. Be kind to yourself, you are dealing with so much it sounds. I do hope you can get the rest and meds you need without being admitted to the hospital. We all know recovering in the comfort of our own home is a million times better than the hospital. It sounds like you have helpful, caring friends to help take care of you....that's priceless. Dont hesitate to ask those around you for help especially right now, you need the focus on you for now. I wish you start feeling better and stronger soon.

Hearts

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Thanks y'all. She had been ill for quite some time, and she's no longer hurting or bed bound. It's a mixed blessing; I was my moms caretaker for years, until my health got severely compromised with my diagnosis and working through that. She was a special lady, and I'm really missing her.

My housemates asked me if the hospital does anything different than what we do at home right now, and it was a yes and no answer. Yes, as they maybe might give me more fluids than what my current script is, maybe medication in a different way, or even some different medications, and they would make sure I eat on a more regular basis and can help me more physically with getting to the bathroom and getting cleaned up. No on the other hand, because I will still be laying in a bed, watching tv/reading/crocheting and sleeping, just a different environment that would have different triggers for me. The first thing that my therapist wanted to do was medicate me so I would sleep, instead if nightmares and the such. Something to slow my brain down. Can't say that would work, but who knows. And I also had to tell them last night for the millionth time, I'm afraid they will send me away. It was mentioned before that they wanted to move me to a nursing home to make sure I'm really over this huge hump when I've been downed like this, and no nursing home would take me because I just wasn't sick enough for them. They told me they wanted to make sure that I got the care I needed, that they couldn't do it for me, so now I'm paranoid that I'm too much for my friends to manage, because there have apparently been a lot of seizures, and a lot of issues that I just don't remember and am not aware of. I'm afraid of hurting them. They are afraid if hurting me.

I'm just really frustrated that getting up, to the bathroom, and back, leave me so breathless, so dizzy and passing out like, that my spoons are just gone (re the spoon theory, I love that story and I use it to relate to). I don't see how washing myself down in the sink with a washcloth can take two spoons. It seems like such a simple act, but oh my goodness... And in my world, I've never been given the chance to just lay here and do nothing, I have always had to pick myself up and keep going. Well, my keep going done went. I can't explain that to my mind.

I can't tell you how many hours I've sat here just trying to contemplate how exactly I would take a shower. I rest easier if I'm clean, and right now, I so totally need to shower. I feel just ick on top of ick. The rinseless shampoo stuff is kinda awkward feeling in my hair, but it is at least a bit fluffy, rather than a total grease slick. But I can't even raise my arms that high to put it on, so I have to ask for help.

I don't know how to fix me, or at least get me back to where I was.

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I'm so sorry for your loss of your mom.

This is a very hard time for you and I think for many of us, could cause a significant increase in symptoms. I'm sorry you had such a bad crash. I remember what it feels like to be unable to get out of bed-very hard and very frustrating too. I hope you can focus on taking care of yourself and feeling better. Try to be patient with and good to yourself too. And ask for the help you need!

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I'm so very sorry to hear about the loss of your mom. I hope you find some peace and comfort in knowing their are people who care for you.

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I'm so sorry, too!

Grief is a bit like work to get through it, and it's so hard to have to deal with your own physical problems when you really just want to be able to be in a mental space where you can mourn.

I really empathize about the showers. I have severe me/cfs and at one point it was so bad that I was too weak to take a real shower for 18 months. It was disgusting, humiliating, and depressing. I used to see people with really greasy and wonder how they could stand it, and then I ended up going weeks between shampoos! The great thing about hair is that it's not like teeth. It can get really dirty with no harm done.

You'll get better and you will be able to raise your arms to wash your hair again. Just take it easy and do the best you can. Unscented baby wipes and fresh deodorant in between sink baths can help keep you clean with very little energy.

Can you afford a home health aide for a couple of hours even just once or twice a week to make a few meals, change your sheets, and wash your hair for you? That might take some of the strain off of your living situation.

I definitely know how it feels to be a burden on others. It's probably frightening for them to see the seizures and maybe they feel in over their head. Have you had a really open conversation about the situation?

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Becia,

I'm so sorry to hear about your mom. But it's good that you can recognize she's not suffering anymore....that's something to hold on to.

As someone else mentioned, it's time to be kind to yourself. Forgiving someone else is hard, but forgiving ourselves (and especially our physical body) is even harder. But I found that once I was able to forgive myself and my body for being ill, I was able to cope with what I could and couldn't do much easier. I will keep you in all my positive thoughts for at least getting back to being able to be out of bed.

Also, have you asked your doctors about getting some sort of braces to help support your hips from dislocating? I know it's not the most important of your issues but it at least might reduce a major complication when you do seize and allow some healing of the soft tissue in the area.

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I'd had them both come out before, it's Ike that part is nothing new, but I'm seriously contemplating some braces now because I just change positions in bed, and it's horrible, calling my doctor again as well as the physical therapist I just dealt with to see if they have ideas, I have an appointment Friday, hopefully will have answers by then.

I'm sending off for baby wipes tomorrow. I used to make my own, so using a store brand is a new experience for me, so I'm hoping I find a brand that doesn't make me itch. I got up today and started another IV to run overnight, and just wiped down with a wet cloth today, really wished I could have just thrown some body wash in the water, but started to get really sick before I was done, so it was just a quick clean up.

We are researching further assistance, but unless my insurance covers some, we are on our own. I've talked with my housemates, and they are fine helping me, and understand how I feel to a certain extent, but stil... I'm freaking out because my body is freaking out, and what I really want right now is a hug.

My orders are literally to do absolutely nothing, and I'm going stir crazy in this bedroom. I almost attempted to go lay on the couch, but the way the couch sinks, I knew getting arranged could be difficult, and that energy I knew I needed to start my IV (the house is afraid if my line, so I have to do evereythg for it, or have another friend or my home health nurse start it), so I opted to stay in my room. The house did pick me up some groceries today, things that don't require a lot if cooking or preparing, so if I feel Iike getting to the kitchen (which I don't, as it's in the other side if the floor plan ), I can make it quick, and they can get things ready for me too. It would be better if I could eat... I have lost the desire to try and eat,

I always say I can only handle one thing at a time. I'm overwhelmed. I think if I can brace my hips, and get that to start healing, it would be a start. If I can stop feeling like I need to be evereythg to everyone, I can focus on myself and heal.

But right now? I need a hug, another pain pill, and gonna watch my fish for bit. I love my fish tank in moments like this.

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And the seizures are pretty common when my body gets stressed like this, what scares me is they are saying these are different than my typical ones. I'm not sure how different, as i still feel the same yucky way afterwards, but I guess another thing to have to take fare of,

I don't like scaring anyone. They keep saying I'm not too much to handle, but they have kids and lives if their own, and I'm so tired of losing friends to my condition. Everyone else seems to be scared around me, except Lori and Dave here at the house. But I'm afraid I might be someday, and no where else to go.

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So, I have a few brain storms....

Do you have room in your room (and outlets) for one of those tiny refrigerators and a small microwave? Maybe that would allow you to keep frozen dinners or leftovers in your room and you could microwave yourself something to eat to have a little more independence? You could use paper plates and plastic utensils too so as not to have dishes to clean.

If your current docs don't have the knowledge about braces they need to prescribe, an orthopedist might be able to help you without the long waitlist of an EDS specialist.

Have you asked your roommates to video your seizures (especially the different types) to show your doctors? This might help the docs know what they've got on their hands as far as diagnosing the type of seizure.

I have extremely sensitive skin (can't use lotions, even prescription, can only use one brand of body wash, daily hives and rashes) and I have found that Huggies "Naturals" baby wipes don't make me itch or get a rash. Of course we're all different but they might be worth a try.

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We are researching further assistance, but unless my insurance covers some, we are on our own. I've talked with my housemates, and they are fine helping me, and understand how I feel to a certain extent, but stil... I'm freaking out because my body is freaking out, and what I really want right now is a hug.

Well, if it's something you want to look into further most insurance companies will cover short term custodial care, for example people recovering from surgery or short duration illnesses that are expected to improve. Your doctor(s) can sign you up for a home nursing service which will typically start with an assessment from a nurse and a social worker, and then they will come up with a plan for how many hours you need per week and what services. Some have PTs that will come so you might be able to get help with your hips. I can't remember how long you can get this for but it probably varies depending on insurance.

But, for long term you need to have either additional custodial care insurance (most people don't have that) or Medicaid. And getting home health aides on Medicaid, from what I hear, is a royal pain in the *** but it can be done!

Hope someone gives you a hug!

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The fridge microwave thing has come to mind, and I asked my housemates about it. The way the electrical is in the house, I'm a bit afraid to do this, as if we vacuum the floors and have a certain light on, it trips the entire house (it's like that with several areas of the house, just weird). I think out of sanity and safety, as my "compound" as I call my room, is wired to their home office and the modems and such, I best maybe not do that. But, when I do move out, I'm so investing in that for my bedroom, because I can see just having cold water available very handy.

Huggins Naturals? That's what I will pick up :) thank you for the suggestion on that. My skin just goes nuts, and we've always made our own in our house before I moved, I don't think I've ever used a baby wipe amazingly.

My roommates and I talk about the seizures, especially when they are happening so frequent, like now. As for videotaping, I don't think we have, but they said this morning I had two last night trying to get back to bed after using the rest room and getting my IV started, and that the past couple days seizures seem a bit different than what I had been doing, which may explain why I'm sore in a different way. I've been hit a lot with pre-ictil feelings, and I'm still feeling post-ictil this morning after resting/sleeping. Last night I apparently told them I didn't feel right, but maybe it was the meds, I wanted to use the restroom before they went upstairs for the night, so I didn't call them later and have issues requiring more assistance, I managed to use the rest room and wiggle back into my chair, but then they noticed when they came to move me and my pole I was tensing and not focusing, which is usually their clue that I'm likely to seize. I had asked them to stop for a second, I couldn't hold my legs up to get into the bedroom ( my wheelchair for the house doesn't have feet so I can use my legs to usually propel myself), and they were talking to me, but I wasn't able to follow commands. Had a small seizure in the chair, they waited for a bit, and I kinda came out if it, but after they helped me into bed, another longer one followed. After the past week, and last week, yep, a video tape I think is in order.

I've got a call in to my doctor and the information for a orthopedist as well, for some braces. I can't even begin to let my hips heal it seems, because the littlest movement if not done right with the amount of support, pop they go. I hate to imagine the soft tissue damage going on, I cringe.

I've inquired for some custodial help, and according to the people around here, I'm too young (even though I'm disabled), and I'm looking into another outlet for home health to assist me. Hoping maybe I can do some PT through there, so they can come see what a typical time is for me, the layout I struggle with, and how better I can strengthen. I think the last sessions of PT I had where I went to an office, were really detrimental. They went with the goal of making me stand and walk, but if I can't get the blood to my brain, there's no amount of standing and walking that will fix the fact I pass out so easily. Did get some good tips for working my legs, and that makes a difference strength wise, but yeah, I still pass out.

I love this board, y'all are amazing people. Thank you so much for your advice and help and hugs.

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Becia,

I just finished PT for pre and post surgery. My therapist had not worked with a POTS or EDS patient before but was aware of what both syndromes involve. She did some research on these syndromes and then made a point to modify exercises so I could do them lying down for upper body, lower body, and core strengthening. In my opinion, any PT worth seeing for those of us with these syndromes will take a similar approach. She understood that when I started developing tendonitis in my elbows and shoulders, it meant back off. She also understood that on days when my HR or BP were out of control in one way or another, the few upright things we did do were off limits.

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Hi Becia,

I have another suggestion that might help. My son's cardiologist wanted him to start back with some exercises. So he is trying to do some every other day. He is doing these exercises in his recliner chair or on the floor due to safety issues. When you exercise, I would suggest you do them on the floor or on the bed if you do not have someone that can provide you assistance. My son cannot do some exercises without assistance. So I help him with the exercises. If your insurance will pay for PT or OT to come to the home, that would be handy. My oldest son is also video tapping these sessions so our doctor can see what is going on.

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My pt was insanely awesome. I loved this guy and his assistant. He was fairly knowledgeable about POTS, and educated her before our sessions together, and they were both really good at letting me work at my level. They left me with a couple of Thera-bands of various resistances as well as some ankle weights, and gave me a full regime to do however i needed, whether in bed, sitting, or if I got adventurous, standing. While I was in session, I remember at least twice we did a standing check, to see if I had any better dealing with everything while upright, and both times we still ended up about my usual 1-1/2 minutes before I went out. I contacted them today to see if they had any other suggestions with my hips, seeing as they dealt with me when the right went out the first time, and are aware of how bendy I am. I'm hoping to get pt to come out here, but I'm not sure what all my home health offers at the moment,

I have the number of an orthopedist, a doctors appointment on Friday with my usual doctor and am taking the info to him. We are trying some extra fluids in the meantime, and right now it's just "don't get up without assistance, don't do anything. ". That's so not in my vocabulary it seems nowadays, but it is what it is.

I've made it back from this once, time to dig deep and make it back again. I'm working on getting some other assistance as well. But today I had a phone conference with my mental health therapist, and am taking his advice... Rest. Got a hot date with Netflix, the pillows I just ordered online (to attempt to support my legs better to be comfy), and another Vicodin, because I nearly fell in the bathroom trying to get my PICC line stuff for the nurse tomorrow, and my legs feel like fire.

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Condolences on the loss of your mother. I lost mine last year after a long illness with EDS. My sister was her caretaker. Symptoms become worse after events like these. It takes a while to grieve and recover, but I have faith that you can recover.

I also know some of what it is like to be bed-bound and be unable to even sit up for very long. Not fun. I know your situation is a little different from mine, but if you want to know how I was able to recover from such a state, just message me and I would be happy to give any advice that might help you.

Best wishes

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Home health came out earlier, and had sent a message to my doctor about how everything was going, and they are sending me to the ER for a quick evaluation in the meantime of everything. Gonna be a few hours before I can go (waiting in my IV to finish and for my power of attorney to get home from work, then an hours drive to get to the ER of my neuro), but just double checking the hips and the fact I'm having more seizures according to the housemates, checking that too.

I'm exhausted. I'm frustrated.

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Thanks. We went, we saw, we came home. I honestly don't remember much, I was kinda out of it, but my friend who took me said they didn't do much, nor did they contact my neuro, so he's making some calls and we are going from there. When we got home, he couldn't wake me up, so I essentially slept in the car, which was kinda funny to me when they told me this morning. It's a comfortable car, that's for sure, and they had brought my shawl and pillow to me. Kills my hips, but I guess I had a seizure on the way home, and he couldn't get me awake to help get out if the car.

I just know right now, I'm really tired. I feel like my body is going in opposite directions.

Right now, I just wanna attempt to eat lunch, and nap some more.

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New developments everyday it seems... I was admitted to the hospital on Saturday, and today they are moving me to an inpatient rehab place to work on getting my hips in better shape, as well as making sure I can fully bounce back better with my current flare. I will be the youngest person at this location, but it's where my doctor recommended, and apparently my POA had been working on getting me in there before he brought me to the hospital this weekend.

I'm terrified, which has my symptoms up in arms, as well as fighting with my hips. But, this should help. I'm hoping there's wifi or something, so I can continue to communicate with people and keep my mental health in check. Becia needs her netflix, her reading, and her support forums, as well as the always going game of Scrabble. I rely on that game of scrabble I always have going with my friend more than anyone will know.

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