It's about 3:45am and I have been awake since 2am. I think I fell asleep around 11:45pm, woke up at 12:15 and again at 2. This sporadic sleep cycle is not one anyone can function effectively on! My sleep patterns are quite inconsistent. On a typical night I will get 2-3 hours of sleep at a time, wake up and read for a bit, and go back to sleep for 2-3 more hours, wake up again, etc. I could not honestly tell you the last time I had a full 6-8 hours of uninterrupted sleep. Pain is the main contributor to my inability to sleep consistently. I often have to wake up and am forced to deal with severe pain....It always seems that pain is worse during the night. Right now I have several mouth ulcers and the most painful of those are located in my throat. I have one large ulcer on the left side of the back of my throat and one large one on the right tonsil. I have always had them in my throat but never have I had one directly on my tonsil. It is extremely painful. It hurts just sitting here, but the pain is exacerbated by drinking, swallowing, talking, eating. It is so diffucult living with pain in your throat every day. To give those of you who don't have to deal with mouth ulcers an idea of what it feels like, imagine having strep throat every day. Now it doesn't always hurt that severely, but it does most of the time. To the point where if my throat doesn't hurt, which is extremely rare, it feels strange. Absence of pain actually feels awkward. I know that sounds silly, but it's so true. I am not sure if I am alone in this feeling, or if others with chronic pain can relate to this as well.
I have been sleeping a lot during the day the past few days. My energy has been completely depleted and I have had a great deal of fatigue. This means that even just walking around the house is exhausting. Regardless of the amount of sleep I get I still feel tired. Living with Behcet's, or any chronic illness, obviously forces one to deal with pain. However, the fatigue is something that others without a chronic illness may not completely understand. It's so difficult to wake up in the morning exhausted. Some people feel refreshed upon waking, ready to face the day with ferocity and vigor and energy. I wake up feeling like I ran a marathon in my sleep (whatever sleep I do get). During the time I was experiencing symptoms but remained undiagnosed, I always wondered why others could get out of bed immediately after the alarm clock sounded....While I repeatedly hit snooze because I didn't feel well enough to get up. I knew it wasn't because I was lazy, I wasn't. I was in graduate school getting straight A's. In addition to a full course load I was working part time internship and studying and working at a restaurant most nights until 1am. I knew it wasn't normal to wake up every day feeling like crap.
Once I was diagnosed, I immediately received some peace of mind because everything I was experiencing was validated. I had a reason, a medical reason for why I was feeling the way I was feeling. Of course I wasn't happy to receive a diagnosis but with the diagnosis of Behcet's Disease came the realization that every symptom was not in my head....Everything fit.
I still struggle every day with looking back and thinking about the "before I got sick ME." I know I have written about this in the past but it is a constant struggle. The before and after thinking is common among individuals who suffer from chronic illnesses. Especially when there is such a drastic change in my ability to function adequately. I am currently unable to work, which is difficult in and of itself because my career as a doctor of clinical psychology defined me. The field of psychology totally consumed me. Helping kids and families was my purpose in life, and it was also my passion. To have that all ripped out from underneath me has been one of the hardest things I deal with because of this disease. I was so active and was social and exercised and worked hard. Now, I feel like a child at times since I am unable to work and take care of myself fully. It feels awful to have to rely on others for so much. You don't realize it until you are in that position. I look forward to a day when I can work again, even if it's just part time. When I can go out with friends and engage in a more active lifestyle. I don't expect to be "cured" and have everything go back to the way it was. I have changed as a person. I don't think I will ever go back to being the person I was. The lessons I have learned along the way have been extremely beneficial. I have learned so much about who I am as a person and what I am capable of dealing with. I am much stronger than I ever thought was possible. I just want to be able to have some semblance of a normal life. I know I won't ever be healthy all the time. But I wish I could go thorough periods of remission.
I guess I will try and go back to sleep....I have no idea why I sleep better during the day, but I do. I can sleep for hours without waking up. More than I am capable of at night. I know I need to try and switch that around...Trust me, I try every day. Thanks for reading. I hope those of you suffering from any illness are feeling okay and I hope you have a wonderful week.
Hi Mandi,
ReplyDeleteI have been reading your posts for a few months now but this is the first time I have commented. Like you, I have also been diagnosed with Behcets. My journey only took 20 years to receive that diagnosis. During that time I saw many specialists and a couple thought that my disease was all in my head or anxiety based.
My disease was finally diagnosed after I developed such bad inflammatory arthritis that my feet and elbows turned purple from broken veins and the swelling was horrific. It was the "last piece of the puzzle".
While I do have mouth ulcers they are not my primary concern. This disease has affected my pancreas. I have constant pain from there and wear a morphine patch. But it's also the acute attacks that come with this. ATM, I have been in bed for 12 days straight with pancreatitis.
I also suffer heaps from skin sores. This can be very embarrassing. But the tiredness is sometimes the hardest, as you have also stated. On my good days I may have the energy to go out to the shops but then I will normally pay for that the next few days.
Hi Pauline, I had pancreatitis from taking Imuran and itw as the worst pain I have ever experienced. I don't know how you deal with that pain chronically? If I understood what you said you deal with that often? Why do you have chronic pancreatitis? Why aren't you hospitalized with this acute attack? I am so sorry...I can't imagine. My major symptom is the recurrent mouth ulcers. I never go a day without them. I mean it's like clockwork...my ulcers also get extremely large. Most doctors say they have never seen anything like it. I have been told I have refractory Behcet's-meaning it's resistant to a lot of meds. That's why I have yet to go into remission. Have you had any periods of remission? I can't believe it took you 20 years to get diagnosed!!! Took me 3, and I thought that was a lot. Where do you live and how old are you if you don't mind me asking? There are a few of us girls that found me on here and we talk pretty regularly. I bet they would love to talk with you as well. I hope to grow our little community so that we can support one another. So far it has been so great just having someone to talk to who knows EXACTLY what I am going through. It helps remind me that it's not me, it's the disease...like when I feel lazy or useless. It's the disease. There is so much more I would like to discuss with you. Thanks for writing, and I sincerely look forward to getting to know you. Like I mention in the next comment, please email me directly at mandifessler@gmail.com. Thanks, and take good care of yourself during this pancreatitis flare up. Have you tried deep breathing to deal with the pain? Oh, and what other pain meds are you on regularly? Or is it just the morphine? I am on Oxycontin, Dilauded, and Actiq. And Celebrex. I have tried Morphine, doesn't work for me. I have become so tolerant that my pain meds aren't working as great, but I am terrified to keep increasing them. Well, I hope you feel better soon my dear. Continue to rest. Sincerely, Mandi :) You will get through this!
DeleteI will finish my comment off saying that just knowing there are other sufferers out there like myself makes me feel a little better and not so unique.
ReplyDeleteAll the best,
Pauline
Hi Pauline! Thank you so much for reading the blog. I love that I am meeting many new people with Behcet's. Although I wish none of us were suffering from this awful disease, I too am glad to know that I am not alone in this struggle. I would love to chat with you further. Please email me directly at mandifessler@gmail.com. Thanks!
DeleteSorry it's taken a while to get back but it's taken a while to start feeling a little better. It's been just over two weeks now of complete bed rest. I don't go to hospital for a number of reasons. The first is they can't do much more there than I can do here at home. Except an IV. I fast and drink fluids and take pain killers. But I'm comfortable. If I passed out or something I felt was out of the usual, my husband would take me up.
ReplyDeleteThe second main reason is that I have a six year old daughter that has aspergers and suffers from extreme anxiety. Any time we have mentioned the hospital she has freaked out. She just can't cope.
So some background. I will be 42 in July. I am adopted but only one year ago found my birth mother and her family. When you don't have medical history and you are I'll it's like the docs don't know what to do. But after the birth of my last child in 2006 I went down hill faster. Luckily my gp is fantastic wouldn't give up. She was the first one since 1990 that actually listened and cared.
My pancreatitis is chronic in that I still have constant pain from it. It is not auto immune pancreatitis but pancreatitis caused by auto immune related diseases. I know tend to know when I am going to have an auto immune flare up as my pancreas does first. The attacks are varying, from a day or so to 8 weeks.