Feeling Lost

[loopey]

I am feeling so lost right now. I can't remember the last time I felt "good". It has literally been years. When I was dx I didn't expect to feel generally sick all the time with no prospect for it to get any better. I have a great husband but I don't feel that burdening him with my illness is fair to him and the same goes for my son. So I feel very much alone.

I haven't been able to sleep. I fall asleep OK but wake up every two hours or so and can't go back to sleep. This doesn't help the way I feel during the day. Also, it has been a long winter and I hope that spring will bring me some relief from my self pity. I have tried melatonin, valerian and magnesium.

There isn't a question here, but if someone has any ideas to get out of the doldrums, I would appreciate it. I think if I could just sleep it would be better but I'm not sure.

[smalltowngirl]

I don't really have suggestions for you, though I wish I did. I just wanted to say "hang in there." I'm so sorry you feel this way and I hope Spring brings rest for you.

[KoKo]

I haven't been able to sleep. I fall asleep OK but wake up every two hours or so and can't go back to sleep. This doesn't help the way I feel during the day.

loopey

Lack of sleep can wreak havoc with us - emotionally and physically.

This is from the NMSS website on Sleep:

Lack of restful sleep can cause daytime sleepiness and — in MS — have serious consequences for cognition, fatigue, mood swings, and physical symptoms such as balance, spasticity and pain. Studies suggest that people with MS may be up to 3 times more likely to experience sleep disturbances than the general population, and about 2 times as likely to experience a reduced quality of sleep.

https://www.nationalmssociety.org/Li...ehaviors/Sleep

I know that when I don't get good sleep, everything is worse, including my outlook and attitude.

Maybe if you could find some solutions to getting better sleep, things might look and feel different.

Hope you can get some good rest soon.

Take Care

[palmtree]

Hi Loopy.

You don’t sound like you are full of self pity. I admire your strength to not want to burden your husband or your son. I feel very much the same about my son and his father. It’s tough!

Are you really in Italy right now? I look at the region people are living because doctors are very different in different places. I wouldn’t imagine Italy would be as barbaric as many places in the US.

There are some wonderful sleep medications that are approved for long term use. Having a way to get to sleep changed my life. If you are not adverse to taking medication talk to your doctor. You will most likely become dependent but that is not a bad thing. The reason these medications are on the market is to help people with long term chronic illnesses live a better life. I think MS fits that description.

Sleep is so important. Think of helping your husband and your son. They may be quietly suffering along side you feeling helpless to make things better.

I am very hopeful that you will find an answer. Let us know.❤️❤️❤️🌴

[Seasha]

Sorry to hear you've been in a funk this winter, loopey. I go through this almost every winter. I have what's called SAD (seasonal affective disorder) which zaps my energy and affects my mood and sleep patterns. I try to up my Vit D levels during these dark months. I also take a prescription sleep aid.

Wonder if you are taking additional Vit D3 at this time or if you've had your levels checked? Maybe you are suffering from SAD? Regardless, here's some information:

"Seasonal Affective Disorder (SAD), a mood disorder featuring depressive symptoms, occurs during the dark times of the year when there is relatively little sunshine, coinciding with the sudden drop in vitamin D levels in the body. Several studies have suggested that the symptoms of SAD may be due to changing levels of vitamin D3, which may affect serotonin levels in the brain."

More here - https://www.psychologytoday.com/us/b...n-d-deficiency

Spring can't come fast enough! Hope you feel better soon and talk with your Dr if these symptoms persist

[pennstater]

So sorry to hear loopey. Winter can be tough. I am sure your husband and son know you are a little off these days. I think anyone with MS goes thru these periods.

I do think it is worth talking to your neuro. KoKo provide some great info on why. Lack of sleep can really cause havoc, physically, mentally, and emotionally!

I, like Seasha, suffer from SAD. I try to get outside for 30 minutes each day, even when really cold. Usually a walk, but sometimes, I bundle up, take a heavy blanket, and just sit outside in the morning sun with my thermos of tea and think of gratitudes or listen to mother nature. My neighbors think I am nuts. I also use aspecial light that is designed for winter usage and SAD. Supposed to start in September and go thru until Daylight Savings at least.

As for ideas, not sure any of these will help. When I am down, I make sure to start my days writing down 3 gratitudes. This am, one was as a simple as the sun finally reappeared! I also journal for 15-30 minutes. For me, it helps to get my thoughts out. I also keep a notepad of quotes that I continuously add to. Some are inspirational, some funny, some spiritual, etc...When down, I take it out and look thru. Finally, music. I have a few playlists set up that I use. If down and I know I need to let myself be down, I have some sad songs. If I have been down too long and need to pick myself up, I have songs from my life that always bring a memory and smile. And one that is just favorite songs.

I hope you can get some restful sleep soon. That really is the key. Take care.

[Jules A]

Depression can result in sleep disturbances also.

If it is SAD Wellbutrin XL is an antidepressant that is FDA approved for SAD and might be worth asking your doctor about.

[palmtree]

I wouldn’t jump to conclusion about any diagnoses. BEst bet would be to visit your neurOS and a PCPS.

Or maybe an alternative treatment would be the answer for you. I don’t know much about them but many MSers swear by them.

Do you have pain?

[loopey]

Thank you all for your responses. It was sunny yesterday and I took a walk with my son by a lake and fed the swans. I felt better all day. I also wrote this down as Pennstater suggested as a gratitude.

Palmtree- yes, I am Italy. I have lived here for many years and the doctors here are very good. There is a MS department at a hospital nearby and my neuro is great. The main problem is that I have been told by him and my first neuro in the US that nothing can be done about my constant dizziness and general malaise. I was a very strong person before MS and can't figure out why I can't just accept this and stop dwelling on feeling bad.

I will try some stronger sleep medicine though I have been worried about it becoming less effective over time.

All of your responses helped me!

[pennstater]

The main problem is that I have been told by him and my first neuro in the US that nothing can be done about my constant dizziness and general malaise. I was a very strong person before MS and can't figure out why I can't just accept this and stop dwelling on feeling bad.

Glad you were able to get out on a sunny day with your son. For me, being near water instantly picks me up, whether ocean, lake, river, creek (or crick as some Philadelphians would say).

Dizziness is exhausting. I can understand why you feel lost when you have that as a chronic symptom. I was fortunate to be helped by vestibular therapy, a form of PT.

I had a rough time when I was thinking that I could no longer work, but at the same time, refused to stop. I saw a therapist. She helped me realize why I couldn't accept that MS cognitive and fatigue symptoms were forcing me out of the workplace. I felt by accepting I was giving in, and to me giving in meant mental weakness and hopelessness. She helped me realize that acceptance is none of those things.

I would make sure your neuro knows about both your sleep problems and your lost feelings. They may be able to help with resources, not just prescriptions.

Hope you saw more sun today. Not sure about Italy, but winter is back in Philly. Brrrrrrr....