How Debilitating Are Your Symptoms

[blueskies]

I put mostly housebound. It's hard to answer because I am mostly housebound at the moment. There are other periods when I can get out more. Although when I do have an active day I'm usually pretty housebound for a few days afterwards. I take a step forward. I take a step back. That does get to me. It also doesn't help that we live in an apartment 2 flights up. Plus one of the reasons I am mostly housebound at the moment is due to our hot summers here in Australia. I'm always hot and hypersenitvie to the sun. I dread going out into the sun in summer.

Thankful makes a really good point.

[fiona-jane]

hiya,

i'm very variable too, with good and bad days although i always struggle during winter months. technically i can select all of them.

i'm technically able to work but i'm only capable of working 3 hours a week. any more and i get really sick- unfortunately i realised this the hard way. i used to be able to work full time but since 2007 my health has been gradually deteriorating so i'm just glad i'm allowed to do a few hours a week work and stay on employment and support allowance benefit so with the 2 i manage to live on the breadline rather than under it. work are really good about me needing to change the day i work, the time etc even at very short notice, and i can take as many sick days as i need without any of them counting towards my 4 allowed incidences before we get disciplined (as they're disability related they're classed as one incidence no matter how many i take). these are the main reasons why i'm able to work (that and its very close in the car... only 10mins). otherwise i'd be totally unable to work. i was very lucky to get the job, it was through one of my church pals who also works there. she heard that the newly built office was looking for disabled staff as they didnt have any and they needed at least one to meet their company's criteria (huge company, but new office (inside a beautiful garden centre, its so nice! ). and the person had to also be experienced, good at their job etc so i was put forward for it.

i'm technically able to exercise and particpate in sport, but only using my wheelchair and i need to take a lot of breaks. and needs to be a sport where the activity level isnt too high for more than a few mins at a time or i pass out. i play wheelchair badminton and it seems to be working so far. and it helps that the centre is literally round the corner from my flat! i experience symptoms when i exercise but as i also experience benefits (it seems the fitter i get the better my body is at coping with flare ups, especially those that come from viruses) so i just take it easy and make sure i listen to my symptoms and go lay down if i get too near to fainting. and take my salt with me and drink loads of water to pump up my blood pressure!

as for going out- i dont go out that often, and actively try and stay indoors in summer cos i get heatstroke super quick (even living in the uk , dread to think how you guys in hotter parts of the world struggle with the heat!) so i cant go very far. i'm mostly housebound, even though every week i do go out for badminton round the corner and get a lift to church once a week. apart from that i dont go out and able to take my laptop home from work so i dont need to go into the office every week. go in every few weeks to catch up. i get my groceries delivered to me, and get anything else i need to buy delivered. the local chemists deliver my prescription medications to me. any errands i try and do via the phone or online, or a friend or family member will go do it for me. as i pay all my bills via direct debit and use online banking, i dont have many errands to do in person every month. used to have loads but over the past year i've been doing all i can to minimise the effort of sorting them all out etc. i dont have children and so this reduces my outdoor chores quite a lot, well at the moment. at one point i'll probably have them as i want kids eventually.

i like to socialise but most of it is at church at the moment (after mass, we have coffee and a chat with my pals and get a lift back home),or after badminton (as i need a break before i can make the journey home, (even though it is only round the corner) so we go up to the social room and make ourselves tea (or in my case, juice so i dont dehydrate. i've been banned from dehydrating fluids after exercise by my badminton pals cos i freaked them out by fainting... oops ) and my pals usually come to me so i dont have to go out . and socialise loads via the internet and mobile telephone- can talk for hours, as long as i talk laying down to stop me fainting!

and generally i've been coping better lately cos i now have a carer a few hours a week (in addition to what mum does for me, cos i have to pay and can only afford a little). it's great to have regular care now so get washed and dressed, get my housework done and any local chores (like popping to local shop for more toilet paper, or to post a letter etc), it means i dont have to do as much that stresses out my autonomic nervous system so *touch wood* i dont faint as much as i used to and generally feel a little less exhausted. i expect thats why i'm able to do the badminton- 6 months ago (before care started) i was always so exhausted that even breathing seemed like strenuous exercise!

oops, sorry for the essay! the more tired i am the more my mind rambles and posts get longer and longer and longer...... oh, and just realised i forgot my evening meds. ooops.....

fi xx

[kmichaelson]

I can work because I have to, but that leaves me unable to do anything social or fun on my off days. All I do is crash.

This is me right now too. I work because I'm able to barely hang onto my job and don't want to lose it if at all possible, but it pretty much exhausts me and prevents me from doing ANYTHING else. I can go for a short, moderate walk most evenings, but sometimes I just can't manage it. I feel like working is good for me emotionally and mentally, but it's killing me physically. If I didn't have to work, I think I could reserve my energy for other things and in some ways have a better quality of life.

Like others have said, I can do errands for the most part, but it's a big effort because I get so dizzy in busy environments.

[britishangel6]

I had to change jobs so that I could continue working. Now most of my time is spent working from home or sitting. Some days I an shop/errands and do housework but that's usually it. I had began exercise but got sick, then flared, now something else we haven't figured out so that's stopped/

[ramakentesh]

that depends when you ask me. at the moment neglible.

[RunningWild]

I am able to work, but I think I will continue to work even if my symptoms get worse. I can't afford to lose my job and my insurance- so I will do my best to continue to come in every day.

The waking up early is rough- but for the most part, my daily work is not too stressful or hard on me. I black out almost everytime I get up from my desk to walk to the bathroom, but whatever.

I wouldn't do well if I didn't have the minimal amount of social interaction that my job provides. I'm a needy person. haha

[tinkerbella]

I'm basically bed bound. I now have a port and have IV fluids 24 hours a day @ home. I miss my hospital friends that I had made for 4 1/2 years. I haven't been the same since my dx: of the essential fatty acid and co2 disorder of the mitochondria on top of pots. I have a motorized wheelchair for community use. I don't have a car that it fits in and I don't drive right now. I take cabs and when I go with family I use my walker with a seat and use store motorized carts.

I have a lot of friends and online friends. My family, kids, and grand kids are the ones who give me so much delight. My granddaughter was trying to cast a spell over video chat last night to turn me into a car so I could drive over to be with them. lol....

I hate that this illness has her living in fear that I'm going to die. I've been sent to the ER @ least 6 times since September by my nurses. Many of the times they treat you for a heart attack. Making us all worry, and I'm sick of all of that. I'm exercise intolerant, the glucose in my IV added a few extra pounds along with the salt. I wish doctors would just do video chat visits, as it's too much to take too cabs into the city these days. Then after comes the recovery. Sleep for days.... I think you have the idea. I do look for the gift in each and every day and I try to make happy memories with those I love. I only have so much energy and I have to use it wisely. I pray for all of us and our families. All chronic illness have a ripple effect in all of our families.

Hugs to all ~

Bellamia ~

[janiedelite]

BellaMia, I'm sorry to hear of your worsened debilitation. You have such sunny, encouraging posts, and it's hard to imagine that you rarely get outside to feel the sun yourself anymore. I agree that it would be helpful if you could have follow-up doctors appointments by Skype for those who are very disabled. Wouldn't that be great?

[tinkerbella]

Thankful,

It sure would....

Bellamia ~

[sue1234]

Bella, I've been wondering where you were! We haven't had a post from you in a while.

[tinkerbella]

Hi Sue,

It's been one ambulance ride after another. I'm so tired and I've missed all of you so very much. I hope I'll be able to pop in more often now.

[TCP]

I'm not able to work. I can socialise on the very rare occasion and only shop when there is someone to hang onto. Not able to do much around the house.

I have autonomic neuropathy, peripheral neuropathy, POTS, ME and spinal degeneration.

[joyagh]

same here. I am currently a SAHM so I have to "work"

I have to do chores, errands, shopping, lift a toddler, etc and can manage most of the time but with symptoms and discomfort, but if I do too much I get really out of whack. If I were teaching dance still I think I'd have a lot of trouble. I did one massage shift where I only did 2 massages and it took me a full week to get over the exhaustion and exarcerbation of symptoms.

This is a toughy. I am "able" to do errands/shop, but in small doses and with discomfort. Same with socializing - if I have to I can force myself, but it's never comfortable. So I checked off that I am able to do these things, but also checked off mostly housebound.

[Freaked]

Been basically housebound since Feb 2013 with only brief windows of being a little better. Tried to see my friends today for the first time in over a month and ended up having to leave the room to sit on the floor and let an episode pass. Trying to be okay was just too much.

[Goschi]

Freaked, I really feel with you!!

I am mostly homebound since summer 2013 and I can absolutely understand how bad the isolation feels... Did you invite a group of friends? I have learned that I can handle it better to see just one friend at a time. And when I get too tired, I would just lay down on the couch. Your friends will understand, believe me!!

This part of our lifetime is so rough... But there will be a time when we all look back at these worst episodes, feeling strong and proud of ourselves for making it through them!!

Sending you all the best thoughts!!

[pink1975]

Depends on the day for me. Somedays I am good, others not so much. I don't miss work, but when I am really potsy (like if I am finally forced to bathe or shower cuz I can't stand it anymore lol) I have a VERY hard time getting to work and staying all day. I only live a 5 minute drive from my office, but that feels like 100 miles when I am having a bad day. And somedays I am ok part of the day and then suddenly not so much.

[DeGenesis]

Clonidine provides me with good symptom control, but it worsens my fatigue, which can sometimes be disabling. Some days I don't eat because I'm stuck in a chair or in bed, and preparing food seems tantamount to running a marathon. On those days I rely on electrolyte sachets.

I'm thinking of trying guanfacine (Intuniv) as an alternative to clonidine.

[little_blue_jay]

Up till a few weeks ago I was able to work but now sadly cannot. (my job is all standing!) I checked Unable to Work and Able to shop/errands - I have no car but the mall is close and if I don't need to carry something heavy I can generally walk home slowly with a small amount of groceries, even if I have to sit down once or twice on the way home.

[EGorman]

I checked able to run errands and socialize. For me, as well as many others, it just depends on the day. After having to call off work too many times, I switched to part-time. We'll see if that helps. If I spend too much time in heat, I get very sick. If I'm too cold, I hurt. It's a recent thing for me to be so limited and it's hard to get used to, but I'm learning to not ignore it and to take things one day at a time. Usually one of the worst things is grocery shopping (because it takes a while and I am dizzy for most of it). My constant headaches are what keeps me at home the most.

[ramakentesh]

Most if the time im fine - sometimes for months almost normal. But it comes back and can render my unable to drive or even shop on bad days.

my med combo gets me through but only when they work whih isnt always

[ramakentesh]

Its a spectrum. I know of a payient unable to get out of bed for five years

[docradmd]

Rama,

What's your med regimen?

[Nymph]

I am "able" to work, socialize, etc. The problem is being able to do all of those things in the same week! If I work a 40-hour week I will be doing precious little socializing, shopping, etc. Just the minimum to survive.

[lynnie22]

I am able to work most days, but that's because it's a sitting job, but sometimes I have to leave early because of blood pressure spurts. Getting to work is harder -- unable to take public transportation because of the standing for a bus or stairs. Work pretty much depletes me, so social life outside home is very limited. As many others have said, it depends upon the day. Chores are minimal, exercise is minimal. Some days, usually one a week, have period of normal in them, so exciting when that happens.

[Jon6945]

Not able to work and housebound but my dysautonomia is part of a more complex autoimmune. Or autoimmunes (plural) I should say. Those being... Stiff person syndrome, autoimmune autonomic neuropathy and multifocal motor neuropathy.