I am a woman in my early thirties who has been stuck in one room and a bed since 1996 due to severe chronic illnesses: Autonomic Dysfunction/Autonomic Neuropathy/Postural Orthostatic Tachycardia Syndrome. Ehlers-Danlos Syndrome type 3. Fibromyalgia. Chronic fatigue/chronic pain syndrome. Coeliac Disease. Raynauds. Sjogren’s Syndrome. Vocal Cord Dysfunction. Chemical Intolerance. Thyroid Antibodies. Polycystic Ovaries, Endometriosis. And probably a few other things I’ve forgotten!
Despite suffering severely I have managed to achieve a great deal and yes, you can live life from a bed!
This blog will be updated as and when I am able, to show what life is like for me but it won’t all be doom and gloom!
Livinglifefromabed@gmail.com
That’s a lot ofdiseases! I hope you keep well… Look forward to reading you!
It’s certainly a challenge! Thanks for stopping by :0)
I live a lot of my life from a bed, too…I empathize! The bed is what we make it, most days, anyway. I’m looking forward to reading you
Hi Shae, Thanks for stopping by :0)
You probably get helpful and less than helpful suggestions all the time, but I wonder if you’ve looked into low dose naltrexone? It has the potential to help the majority of your conditions, at least fibro, CFS/ME (if that’s what you have), Celiac, Sjögren’s, chemical intolerance, autoimmune thyroiditis, PCOS, endometriosis and possibly other conditions too. Some people find it raises their abnormally low blood pressure. My friend with EDS said some people are studying LDN for EDS as well, but I haven’t been able to find information about this (she read it in a patient newsletter/magazine).
Thanks but I wouldn’t be able to take it due to the painkillers I’m on which are the only ones I am able to take.
Hello,
Thank you for your inspirational blog.
I am a 58 year old woman who has suffered from Rhumatoid Arthritis since the age of 27, I also have a visual impairment. Six years ago I was diagnosed with Fybromyalgia, a condition that I had never heard of. I am as mobile as I can be when I am not exhausted.
There are many people who are unaware of illness Fybromyalgia and many Fybromyalgia suffers are still looked upon as “being lazy”. I have started a blog these past few weeks to try and help people understand what having this illness is like. I saw your blog and it has inspired me to continue with mine.
Thank you, and I wish you all the very best
Thank you for your kind words. Good luck with your blog :0)
Hi! I just found your blog doing a search for costochondritis. I have POTS, EDS (not sure which type), celiac disease, eye problems (posterior vitreous detachment and spontaneous torn retina), purple feet (not raynaud’s but from blood pooling), possible mast cell activation (My POTS is much improved on antihistamines) and now my chest is hurting and I think it is costochondritis. I’m sorry to see you and others have many of the same issues but thanks for sharing, it really helps to know we are not alone. I’m going to spend the next couple of days catching up on your previous posts. Thank YOU for your blog! My best, Sweetfeather
Hi Sweetfeather. Sorry to hear you also suffer but glad you found my blog :0) Enjoy reading!
great blog!
Hi! I am also a woman in my 30′s who lives with Chronic Fatigue Syndrome & associated conditions. I’m glad to have found your blog & I look forward to reading more of your posts. I love the title too, as I also certainly try & live to the full despite being limited to the bedroom a lot of the time.
Hi Alison, nice to ‘meet’ you :0)
Hello there! I just came across you and your blog via Twitter’s suggestions of people I should follow. Bless your heart! I have fibromyalgia, migraines and chronic depression/anxiety. I have been bed ridden a number of times over the years. I was totally bedridden in 2002/2003. I could easily let myself go there again. I do end up in bed by about 3:00 every day. If I don’t have to go back out for anything I usually just stay in bed. Anyway, I wanted you to know that I can identify. I look forward to following you on Twitter and here at WP. Feel free to come by my WP.com blog anytime.
Just found your blog. I’m a 48 year old woman with EDS hypermobility, Chronic Fatigue Syndrome, Migraines, etc. Living a housebound life as well.
I look forward to getting to know you through your site and wishing you the very best.
Hi there,
Just checking out other POTS related blogs and came across yours. I am sure people suggest various treatments to you all the time, and I apologize if you think it’s annoying, but have you ever tried IVIG (intravenous immunoglobulin) for your Sjogren’s and other autoimmune conditions? I have POTS caused by the autonomic neuropathy damage that Sjogren’s caused in me. When I got IVIG, the neuropathy I had for at least 2 years (probably longer) started to heal. My POTS symptoms, which had me bedridden for about a year, greatly improved after 2 months of IVIG infusions. This is becoming a more common treatment for severe Sjogren’s neuropathy, but unfortunately not too many rheumatologists think of it as an option for Sjogren’s. Just thought you may want to check it out. And IVIG helps a wide array of inflammatory/autoimmune conditions too. It’s good stuff! I was on daily IV saline with a chest port just to keep my blood volume up (plus flourinef and other drugs) and now after the IVIG I am off the saline and feel pretty good. I even drove for the first time in 2 years and went to the movies last week.
Here is a journal article on IVIG and Sjogren’s you may be interested in: http://brain.oxfordjournals.org/content/128/11/2518.full
Best wishes to you,
POTS Grrl
I have a lot of the same disease you have, and I’m SOO grateful to have found your blog. I have been sick since the age of 16 (now almost 20) and I’ve felt so hopeless and lonely in this ordeal. Reading your blog has helped me realize that I’m not alone in this struggle I’ve been given. I haven’t read much yet, but I can promise you I will. I’ve been so discouraged lately and a friend recommended this site and it was an answer to my prayers. Thank you for sharing your story (and the pain relief tips link, I can’t wait to start trying them!) My blog is whitneyhomer.blogspot.com
Thank you again.
I’m glad you found me
but sorry to hear you struggle with the same things I do. Hang in there and try and keep a smile on your face. Sending virtual hugs to you.
Hi I just found your blog while looking up Costochondritus. I was diagnosed with it in Feb after being taken into hospital with severe pain in the chest!!
i also have a lot of other illnesses and seem to be in bed a lot of the time too. Its so nice to find someone who knows what it is like to live in pain all of the time.
Just knowing that im not alone helps.
Thank you for your blog!
I am glad I stumbled upon your blog. I feel for your situation and am hoping to help people like you and like me. About 3 years ago, August 2009, I fell off a horse and broke my back. I am a paraplegic, I hate using that term. Because of my spinal cord injury and the many complications that surface over time, including muscle spacicity, osteoporosis and circulation problems. I just had one of my toes amputated because of a device I was wearing to help keep my toes straight. Because of spacicity they started curling up. Also, I have bad swelling in my legs and feet from sitting in a wheelchair and I have lots of nerve pain. I spend a lot of time in bed so I can keep my feet level or raises. I am 47 year old and have owned several successful companies over the years. I am starting a new website and blog called http://www.bedrat.com. From first hand knowledge I will be showing people how to be productive from their bed. Specifically, how to earn an income and living from your bed and how to stay healthy. There will also be cash-back deals on everyday items, including health related items. The website and information is all free. I hope to teach people who are bed-ridden to be self-reliant since a high percentage of those with mobility issue rely 100% on their benefits. I will also show how you can make money and it won’t affect your benefits. My launch date is set for Sept 1. I believe my website will be a benefit to you and your readers.
Thank you,
John Freeland
Hello
First of all, I’m so sorry you’re so sick. I was bedbound for 9 months, they seemed like an eternity so I can’t imagine what it must be like for you. You’ve probably heard this a million times but I have to mention it for my own conscious, please, please thoroughly research lyme disease. My symptoms are so similar to yours, lyme is often misdiagnosed as CFS/ME and causes POTS, IBS auto immune conditions… the list goes on and on. I know so many potsies who are starting to go to lyme doctors. I only found out about lyme from googling and as most lymies, I had a negative ELISA and was abandoned by my doctor. I kept fighting and paid privately for proper testing and I was positive. I’ve been on treatment for 6 months now and I can leave the house, socialise… it’s amazing. I’m not going to lie treatment is horrible. On average it lasts around 2 years and you can always relapse. But it’s SO worth it. Unfortunately in the UK you have to do it privately, and many people go abroad.
Sorry for the long message! I just think every potsie should properly look into lyme, as it just might be the thing that gets your life back.
My POTS is caused by EDS as confirmed by a professor in EDS/POTS. I’ve been ill with both my whole life. It just got worse with stress, viral illnesses etc It’s very unlikely I have Lyme disease. I never went anywhere that would get a tick bite. Thanks for the suggestion though :0)