Hello Everyone....My take on this over 35 yrs. isn't going to be something I wish upon any of you, but for some of us it's our lives.
I had fallen into a pattern of sleeping from 4:00 a.m. until 9:00 - 9:30 a.m. So, we're talking 5 hrs. per day...at most. This would last for 3 days/nights and then I would be wide awake for 4 days....I mean really awake and if I could be moving the things I could accomplish! So, 3 days with sleep, albeit no 8 hrs. and then 4 without anything. But I was limping along and I can't say I was a witch and abusive to others, including my own family. I was doing just fine given what I have to deal with.
I was then hospitalized back to back in January and then again in March (elsewhere I've written April; my mistake). I was naturally unconscious both times the last time being 2 days. I have no memory whatsoever of anything that occurred in that time...thank goodness I was told or I would seriously be doubting my mental capacities. Actually I've been hospitalized 8 times in the past 14 mos. (now...out for 3 mos. or a bit more). Each time has been a different reason, all very serious. It's as if my body is simply falling apart and there's nothing I can do to help it.
OK....In January after much time and many different tests, including ones some doctors would prefer not to b/c of how hard they are for the patient. At that time, it was found that I was suffering severe seizures caused by something called Autoimmune Encephalitis, a fairly new diagnosis, and the seizures caused me to fall, break my wrist. right to the events in January and then in March - as much as I fought to ignore all the symptoms (you know how it is to accurately describe your conditions and causes!). I am finally working towards breaking my insomnia, the longest it has ever lasted: I had 5 hrs. sleep last night; wonderful for me, tonight is restless, although I'm sitting here typing with my eyes closed out of exhaustion. I seem to naturally fall asleep between the time of 4:00 a.m. to about 9:30 or 10:00 a.m. That will often happen, if I'm left to it.
I had seizures which were causing brain damage by the time they were found out, followed by not being able to shake a cough and plenty of other signals that I never think of being significant .I was put on steroids both times (and i do horribly on them), many new meds, including additional ones given by IV, and 2 anesthetics so they could track down what was occurring. Here I had congestive heart failure and was given 2 more stents, meaning that I have 5 in total, hopelessly high familial cholesterol, BP that has gone from ultra-low to a combo of high to low (during and after menopause which began at 42 in my case), even though I'm fairly petite and about 15 lbs. underweigh at that time. Even though our r diet is a good one...my genes are not.
OK, I've been dealing with this insomnia for 35 yrs. now. I have 3 different neurological conditions and ME was the 4th diagnosis. Who knows what causes what. I was also found, in the very beginning, to have a pituitary tumor, controlled by medication and now gone. I won't say that it has been an easy road, but I've accepted everything, even congestive heart failure. I am 73 and am able to do whatever I can/want during the day, have a wonderful husband and children (now 49 and 46), so I really have no complaints, thankfully.
I know it's harder when you're young. I'm quite aware of that and it's one of the reasons we have to find not a cure (b/c I think the causes are very diverse) but help to deal with our symptoms. We've made a LOT of progress since the days my illnesses began. Trust me, it may not seem it, but we have. But too many lives are stopped at too many young ages and too many are not given a chance. This is because of research (younger and younger people are found to have this...I was once considered among the youngest), yet we have nothing in the way of a cure to offer them. Please accept what medicine has available for you. Use something for anxiety or get it under control yourself, learn meditation and breathing techniques, try to meet people who also have the illness (if you can), it will take time....but learn to accept your life & I know how hard it is, but once you do, it's an incredibly free feeling.
Be happy for family and friends who marry and have children...why? B/c they are your allies and can bring much to your life. Look at their children and treat them with respect and kindness, you'll have people who admire and adore you. Valuable allies, indeed, in the years to come. And do as much for yourself as you possibly can. Again, I know what it's like to be held in our bed of pain, expecting the worst but find solace and peace where you can. Try to at least walk around the house, join the world as much as possible, and have perhaps the most important thing of all....HOPE. There are now meds that we never had: gabapentin to stop the signals that send pain down the spinal cord to the nerves....this was our first breakthrough drug and helps immensely. I now take lyrica, the first child of gaba, if your neurologist wants you to go on an anti-depressant, do it...most doctors are kind and knowledgeable, antidepressants are able to help with pain, also, there are now special creams made at compound pharmacies that help immensely with remaining pain....ingredients are specified and change frequently as more and better ointments are discovered. These go through the skin and aren't absorbed by the organs and, I'm sure there are many more that I have either forgotten about and/or have been discovered in the past few years. Meds are being discovered with great frequency; use the tools available. Yes, it may take 6 wks. to adjust, but do you have anything else to do? If you're allergic to them immediately stop, but give things a good try. for some it can take a very long time as the body adjusts. I used vitamins/supplements for many years. Now I'm down to about 2-3 times/wk. I've learned it's important to kep the body in balance....so important. If you can't bear the side-effects of new drugs, talk to your doctor about Ian alternative.
I want to finish up with sleep: For years my Dr. tried every sleeping med available, and there are many...one night of help, at most. I keep myself quite busy during the hours I'm wide awake...and no longer get upset about any of it. If I don't sleep; I don't, and I can assure you that it's not going to kill you. I do a lot of computer work, will fall asleep and wake up to an almost ruined page, I do something like this as a break, I write letters and stay in touch with old friends who go back to my earliest days. I'm a book lover and always, eternally have something going. Old friends knew me and my family at a different time in our lives. Some come to visit me, all have problems now. We've experienced life and have seen its warts.
My biological family is now almost gone...I've lived much longer than I ever suspected and you know, life becomes different but still fulfilling if we do something to help others. There are many opportunities in many organizations. You're a highly computer literate generation, don't waste your talents and time. True, you may tire easily, but start it again tomorrow. Little by little we make progress and there will always be setbacks. But that's all they are, setbacks. For a couple of days, week or even weeks going into more than a mo. I know, I was once in bed for a year at a time, still am depending upon what occurs, but I'm always hopeful that I'll spend time, lots of it on my favorite place on earth, my back porch. It's freedom and I crave it. Find something like it in your life....reconnect with nature in some ways. Put a bird feeder outside your window for the days when you are bedridden. These are the things (and many more) that got me through the 'dark night(s) of the soul.' Keep seeing family, friends and neighbors who are invited for a cup of coffee. If you're stronger, visit with them sitting up in a chair. If you're exhausted, the cup of coffee only lasts so long. Laugh with them and ask them to tell you something funny that occurred, read about those who are worse off than you are....accept.
So, I finally slept for about 4 hours last night...it is starting to break my 19 day sleepless route. I may or may not get some sleep tonight, I'm on a lot of new meds and they may have a role in this....time will tell. And if it turns out to be permanent, I'll gnash my teeth, be depressed for a certain time, go within myself remember that I have my family and I'll once again emerge. I'm old now; I've learned. May I wish you better health and some restorative sleep. Yours Lenora.
