I have to clean this weekend and my body in pain will protest. I didn't even want to make dinner last night but had to. No choice in the matter. When you feel like smashing the dishes into the trashcan instead of washing them that is not a good sign. Disabled people can fail to clean, there's a million movements to keep one apartment clean and my body only wants to do some of them. I see all the undone tasks and it's torture. Wanting to cry over undone dishes, is not a good development.
When I do other activities like going on the bus to art class and appointment and having a friend visit for few days, all energy is put one direction, other things SLIDE. My body hurts a lot. Sometimes I think I may have to ask the doctor for pain killers just to function. Some shout "You will become an addict", I avoided pain killers fearing I would never poop again. I may need them now to keep the apartment clean and to function.
What is scary about my body is the more I exercise, is the more it breaks down, it's not supposed to work that way but it does. I tell doctors this and they tell me I need to go rest, and I am more active then most people my size. You will see me fade as a day goes through hunching over my walker, groaning and moaning near the days end. My doctors have told me many people my size are completely bed bound or housebound from not being able to walk. They smile at me and say things like, "You are doing well, keep at it." Maybe this is from their shock that I am still alive. It's like living in hell knowing no matter how perfectly I eat or move around nothing burns off. The body gives me endless middle fingers for telling it to do anything. I am having one of those days I plan to spend in bed. I will get up to shower and to do one bout of dishes, maybe wrap and move around for a few hours but the majority will be here in bed. The "collapses" are coming more frequently.
I have wondered though, what if I had the pain killers and could do more? Yes I fear addiction. I am the kind of woman who won't even take Tylenol unless I am dying. I tough out migraines with nothing. I got Codeine for my dental surgery and it's the only painkiller I've taken in 5-6 years outside the Bentyl for IBS from some years ago. Codeine I seem to tolerate well though it makes me sleep more. The doctors may say no anyhow.
I can END my PAIN too, if I do a Flexitouch session and stay in bed for many hours. I am not in pain now after being in bed except the usual low level ache, that is always present.
Last night though I felt like I could barely walk myself. Every step felt like torture. I had gone to my art class and been on the bus both ways there, with waiting time. I walked around the art center. I had cooked dinner the night before and served husband lunch before I left. I collapsed into bed for the afternoon and got up and made dinner, and then did the dishes, I did not want to do.
I used to be able to block out pain. Doctors have marveled at my ability to block out kidney stone pain, I didn't tell them about the time I suspected I literally passed out and even the mammogram woman, said something weird to me last November saying, "You are used to a lot of pain, I have never seen a woman this stoic, getting a mammogram exam." as she squished my boobies. On the pain meter, she didn't realize that was barely nothing.
It gets sad, when people see us both limping around. He has a bad case of gout, and can't walk. When your caretaker can't walk and your car is temporarily broken down--it is the battery, life gets scary. I am worried about my husband. Last weekend I was at the veggie stand--limping after a friend's visit gathering up the vegetables to buy and he was unable to walk and limped in to pay and one healthy chipper lady said to me, "Are you two going to make it?"
I may be asking doctors for pain killers to be used on worse days. Maybe there is one that is not addictive. The war on drugs has made too much weirdness when it comes to pain killers. I don't look forward to being treated like a drug addict if I do go on some. I have put it off as long as I can too. They may say "No", so it will be a moot point. I also fear pain killers lower metabolism, so that kept me off them too this long. Any Lipedema peple please chime in on this one. If you are on pain killers chime in on this one. Maybe I should research natural ways to relieve pain too.
Now trolls don't tell me to "lose weight". Your magic spell isn't working for me. My food has been reduced via involuntary means, I have been doing more, from necessity and exercise is no help to me either. So in advance go bugger off.
There are services for cleaning your house if you are disabled and low income. You could check that out.That might take some stress off. I know it doesn't answer the pain prescription question. There are pros and cons with that. Good luck with your decision either way.
ReplyDeleteI was turned down for cleaning due to having a husband, I did apply. I know it's been harder with him being sick. I may go talk to an elderly counselor over at the disability services about what do I do when he gets sick or is there special respite services for caretakers, it's time to do it. I want to delay pain killers and take them as little as possible if I do get a prescription. I did have a few very busy days where I got the bad pain, in bed I am feeling better now. I am going to look at some natural pain relief too, but obviously you can see why I am getting worried and want to know what the options are. I want to know what I am getting into, if I do go down that road.
DeleteSorry you are in so much pain though. It is extremely stressful and frustrating;and spectacularly unfair that people who need pain meds are seen as criminals.
ReplyDeleteThere is huge stigma. I may not even hardcore narcotics at this point just something to take the edge off. Migraine drugs were refused to me, for years, heart troubles and migraine pills don't mix. I learned to take that pain though thankfully migraines lessened with age. I think it is horrible they are seen as criminals too and it's wrong. They go on about the opoid epidemics. It is worrying me that doing more just hurts so much, and well, where is the building up then? I am in bed today thinking, "you don't want to end up in bed for good" but it makes the pain go away.
DeleteYes, if he's sick too, I would think they would then help you.
ReplyDeleteEven if you are not psychologically addicted your body can get addicted. But probably not if you only take them occasionally.
I would talk to your doctor. They can be problematic with certain health conditions. It all depends. I would get advice from other people with lipedema. That is a good idea.
I would think they would help me too. He needs to get over the free clinic when our car is running but that probably won't be until Monday. Yeah I don't want addiction problems on top of everything else. I need to know how much of a danger that is. I've taken Codeine and even Bentyls would make me "high" but I never got addicted to any of it. I know because of sleep apnea a lot of painkillers are off the menu. Thats what one doctor told me. I may need to find more natural methods or accept that I am going to be doing things and in bed for hours in trade for it.
DeleteThat's so awful that your body exacts a toll of time in bed for your activity, instead of rewarding you with making you feel better. Medical marijuana might be helpful if you're somewhere you can get it (maybe after election season depending on where you are!) to ease pain without the same kind of addiction problems and constipation and other issues that regular painkillers have. I also have been reading that marijuana use is linked with weight loss which surprised me. The researchers seemed to think that it's because it eases pain and allows people to be more active. That's assuming you have a standard-reacting body of course. But it could even help with the stress.
ReplyDeleteI know, it is something I wish I could figure out. Why do I get more pain and misery? I am wrapped too, and the legs will push against the wrappings, or sometimes fluids come off more when I am walking around and wrappings drop. I wonder if they will legalize marijuana, I think it should be, prohibition didn't work. I don't partake of it but I have read it helps with cancer and other things like glaucoma. Interesting it gets people to lose weight. Some states do have medical marijuana.
DeleteI've told doctors this problem, why does moving around tire me out and make me sicker. They say, "Keep moving around as much as you can" and "This is part of your illness".
I'm pretty sure you would qualify for a caregiver in the state I live in ( unless your husband makes too much money...which isn't that much really)
ReplyDeleteI'm a Home Care Aid here and I think my clients make around $1600 a month or so. I cook and clean, take them to appts and do any other personal care they need. Sounds like that would be a big help to you! And
We had a therapist tell us to look into having him paid as a caretaker. I am going to research this now. He doesn't make too much money as far as I know. I am not sure how it all works. Glad you help your clients. Husband does have health problems and could be needing to reapply for disability but he is in that nether world considered too sick for anyone to give him a real job--[well keeping one would be a hard slog] but denied disability in 2009. Thanks pegjo.
DeletePeep, have you ever heard of Kratom? It's a crushed leaf called mitragyna speciosa that grows in tropical places such as Thailand and Indonesia. They sell it online. The FDA/DEA who work for Big Pharma are trying to make it illegal and they have succeeded in making it illegal in a few states but it's still legal most everywhere. It's a subtle pain reliever that also works great for PTSD and anxiety which is why I use it. It doesn't taste that great but it works wonderfully. You just mix a teaspoon of it with some orange juice and in about 15 minutes you feel "normal" again. Not high or woozy, just NORMAL, like when you were young. It's really good stuff used in moderation. I'm an herbal junky and haven't been to a mainstream doctor in 16 years. But the FDA/DEA don't want us to have anything that can help releive pain without a prescription to their toxic witches brew pills full of chemicals. Kratom is relatively inexpensive if you use it in moderation. It only takes a very small amount (about a teaspoon) mixed with OJ or you can mix it with water but it's GROSS! Lol. It really works. It's the best thing I've ever taken for depression and anxiety. They have different strains of the leaf called "white" strains, "green" strains and "red" strains. The green and red strains are best for pain, anxiety and depression. Green for daytime and red (the most sedating) for evening. White is best for mornings, it gives more energy than pain relief. The Red Borneo powder is the best for pain in the evening. And what's really great is it just wears off gradually. It's very subtle but effective. I've stocked up on it in case they ban it.
ReplyDeleteI had another friend tell me about Kratom telling me they were trying to make it illegal, that was the first time I heard of it. It sounds nice to have a natural pain reliever. Where do you buy it? is it still legal. That is creepy they want to outlaw this herb all of a sudden, gets kind of crazy doesn't it. My pain got worse yesterday too, feel like I can barely walk so this can be a serious problem for me. I went to art class, and library yesterday normal people should not feel crushed just doing a few things and I had husband driving, didn't take the bus this time and him putting walker in car etc. I picked up food at a food pantry too. Am glad you were able to get some. I hope they fail to make it illegal. Sounds like whenever word gets out of something working they want to restrict it. I hope it is legal in my state still.
DeleteYou said you once lived in Chicago in one of your previous articles so I can tell you that it's still legal in Illinois. I get mine from a place called RelaxRemedy.com. They are located in Florida where it is also still legal and they are very professional and discreet in their packaging. They double wrap it and there is no indication what it is on the outside. They also sell soap and other herbal things. I have a lot of it because I began stocking up on it back in August when the DEA threatened to ban it and people EVERYWHERE PROTESTED. They had a march at the Whitehouse and nearly 200,000 people signed a petition which caused the DEA to delay their ban temporarily. You can go to AKA (American Kratom Association) and read all the testimonials of people from all walks of life who take kratom for all kinds of things. I would be happy to mail you an (unopened of course) sample to try if you'd like. From RelaxRemedy. You can private message me at twignboog@gmail.com if you want.
ReplyDeleteI don't live in IL anymore, but I will check or my state. Chicago can now track people down NATIONALLY for parking tickets, yes that is scary. I am going to look into it, it sounds like it would a safer remedy then heavy prescription drugs but have to make sure it doesn't contradict other things I am on like the heavy kidney medication. Thanks for your email. I'll email you some time too. :)
DeleteOk. I look forward to hearing from you :]
ReplyDelete