Sleeplessness SUX

Insomnia and sleeplessness SUX!

I don't always sleep well. Yes, it's an MS symptom! I may only get 3-hour sleep breaks here and there... it's only about one day in three/four that I manage to grab c. six-ish hours straight. It's frustrating in the fact that, as a young man, I used to sleep 8-9 hours straight through (and like a log!), no worries at all.

I miss not being able just to quickly drop off into sleep anymore (I used to be able to, but not now, it seems). Lately, it takes me up to an hour to fall asleep. My random (painless) MS leg twitches, when I first lay down, keep waking me up!

It's not that I'm stressed or upset, there's nothing wrong nor troubling me, or that my mind is ticking over or I'm overthinking - nothing like that. I'm just finding that once I wake up after a c.3-hour sleep - I'm wide awake! I've tried different things in an attempt to fall back to sleep. I'm just one of those people who does not like just 'laying there', waiting for sleep to come. So - I get up! I may read a bit, or watch a bit of a DVD, or surf a bit - especially if it's in the middle of the night (as so often happens!) I'm not going to get domestic and make a lot of noise at that time of day - that's not fair on my neighbours.

Sometimes, I also feel extremely fatigued... the sort of mental and physical tiredness/weariness/exhaustion that doesn't necessarily go away after a good sleep.

These "disrupted sleep patterns" are symptoms of both my Bi-Polar and MS - well done, Mal! D'oh! Trust me...

► "AWAKE"

A film exploring the link between insomnia, mental health and MS

Source: https://youtu.be/R1RpZtnUrsw

➽ The catch-22 is... I'd really just love to sit, chat and hang out with friends... but seriously, who else is wide awake and up at this time of day (ie. middle of the night)?!?

➽ I'm finding Twitter a MUCH better and helpfully productive and wise resource at this time of day... Facebook just feels too full of pointless information for me at the moment... & too many trolls.

Watch this video: "Sleep Disorders in MS"

(Source)

➽► Blog: "It's 1am, so..."

➽► Article: "Poor Sleep"

➽► Article: "MS-related Insomnia is Exhausting"

➽► Article: Sleep in MS: more important than we thought

➽► Blog: "I don't sleep... I just nap"

💥 Good sleep habits for beating insomnia 💥 

Good sleep habits, also called sleep hygiene, can help you get a good night’s sleep and beat insomnia. Here are some tips:

• Try to go to sleep at the same time each night and get up at the same time each morning.

• Try not to take naps during the day because naps may make you less sleepy at night.

• Avoid caffeine, nicotine and alcohol late in the day. Caffeine and nicotine are stimulants and can keep you from falling asleep. Alcohol can cause waking in the night and interferes with sleep quality.

• Take regular exercise. Try not to exercise close to bedtime because it may stimulate you and make it hard to fall asleep. Experts suggest not exercising within four hours of going to bed.

• Do not eat a heavy meal late in the day. A light snack before bedtime, however, may help you sleep.

• Make your bedroom comfortable. Be sure that it is dark, quiet and not too warm or too cold. If the light is a problem, try a sleeping mask. If noise is a problem, try earplugs, a fan or a “white noise” machine to cover up the sounds.

• Follow a routine to help you relax before sleep. Read a book, listen to music or have a bath.

• Avoid using your bed for anything other than sleep or sex.

• If you cannot fall asleep and do not feel drowsy, get up and read or do something that is not overly stimulating until you feel sleepy.

• If you find yourself lying awake worrying about things, try making a to-do list before you go to bed. This may help you not focus on those worries overnight.

• I’m sure if you have suffered from insomnia for a long period you have already tried all of the above. These tips helped me but definitely haven’t cured my insomnia.

(Source)

Bookmark this page: MS Insomnia SUX!

Also: Insomnia Sucks

Peas be with ewe 
Mal

The Twitchies

Leg Twitches/Spasms

Another one of my strange MS symptoms. For me, these "Twitchies" feel like momentary tiny pinpricks (like a tiny electric shock/jolt) in my calves and toes, but usually, only happen (randomly) when I lay down to try to sleep. The painless sensation makes the muscles in my calves involuntarily 'twitch' or jump slightly, and, of course, wake me up! They do not always last for long, but it's annoying when they stop me from falling asleep - which doesn't come as easily as it used to, dagnammit!

I've noticed them occasionally at other times as well.

Once again, it's the whole randomness of it all that is the weirdness of it all. There seems to be no 'trigger' for them to start. And they don't happen very frequently, either.

➽ Article: MS Tremors: Causes and Treatments

Bookmark this page: Mal's Leg Twitchies

Also: Twitchies

Peas be with ewe 
Mal

Managing MS Fatigue

(Original Source - thanx Dizzy!)

Fatigue is one of the most common symptoms of MS, affecting around 80% of those diagnosed, and it can have a massive impact on day-to-day life. One of the problems is that fatigue affects everyone differently, and that can make it really hard to explain to others!

People with MS can be affected by fatigue both mentally and physically. It can range from feeling tired to having a complete lack of energy, which causes your body to feel super heavy. It can also make other symptoms worse.

Unfortunately, fatigue isn’t something that we can completely get rid of, but there are ways of helping to manage it. It's all part of our daily "Balancing Act".

► Video [below]: Manage MS Fatigue

View on YouTube

► Video [below]: What are the best ways to alleviate fatigue?

(Source: https://youtu.be/JQrYwxRaGIs )

► Video [below]: The Lightning Talks: Heather - My 5 Tips on Fatigue

( Source: https://youtu.be/3gZt9PZHpYM  )

► Sleep

Sleep, sleep and more sleep! It’s really important to get a good night’s sleep so that this does not cause an increase in fatigue. I find it helpful to ‘switch off’ an hour before bedtime, and to do something relaxing in this time, such as reading a good book - try staying away from that dreaded small lit screen too!

Don't feel guilty about taking daytime naps, as they can be a huge added bonus as well.

► Prioritizing

By prioritizing tasks and activities it can help reserve energy levels for the things that we want or that are needed to be done. This is a tricky one, if you’re like me you always want to be able to do more, but it’s important not to overdo it.

Making a list of the tasks you need to complete each day and deciding which are the most important can also help with this. Make a list, and feel a sense of achievement as things get marked off when completed - but be flexible and realistic, as things feel easier some days more than others.

► Relaxing

Life is stressful for all of us, and living with a chronic condition can make it even more stressful. We can’t avoid stress completely but we can take time out to relax.

Stress can cause an increase in fatigue so having stress-free times throughout the day can help to give us a little more energy.

► Looking after you

Eating a healthy, well-balanced diet and drinking lots of water are both important for helping with energy levels. Yes - keep hydrated.

► Exercising

For me, a lot of the time even the thought of exercising is exhausting. However, it has been proven that even a small amount of regular exercise can help to fight fatigue.

Sometimes it’s not always possible to do much, but even some gentle yoga or stretching can make all the difference. Even an easy walk is a great way to help blow the fog away, too.

► Keeping cool

Heat can cause an increase in fatigue. If this affects you then it is important to try and stay cool throughout the day, especially in the summer!

► Listening to your body

Listen to how your body is feeling and if you feel tired take the time out to rest. It can be really useful to have periods throughout the day to rest and have short naps (or two-hour naps if you’re like me…).

Listening to your body and taking time to rest when it needs to is so important, especially when it’s easy to get frustrated and keep pushing when you’re just not up to it.

This can help you to then have more energy during the rest of the day.

► Article: MS Fatigue: 9 Tips to Help You Feel Better

► Article: Exercises at home when MS fatigued

Bookmark this page: Managing MS Fatigue

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Peas be with ewe 
Mal

Archives - My MS Journey

Archives/Older Posts
My MS Journey Blog

11 April '22 - Vertigo

8 April '22 - Making the Most out of your Doctor's Appointments

19 March '22 - MS and Sound Hypersensitivity

16 Dec '21 - MS and No Guilt

14 Dec '21 - A new MS Blog discovered: "18 Disabled"

19 Nov '21 - Mood Swings

19 Nov '21 - The Dizzies

17 Nov '21 - Wearing a Disguise with MS (Article)

16 Nov '21 - Other MS blogs

16 Nov '21 - Guys With MS

16 Nov '21 - MS and Heat/Hot Weather

15 Nov '21 - How MS began for me

15 Nov '21 - Dizzy Fingers

15 Nov '21 - Isolation

11 Oct '21 - Depression

11 Oct '21 - My MS Symptoms

11 Oct '21 - Asking for Help is OK

11 Oct '21 - How to Survive Diagnosis

10 Oct '21 - My MS Journey

10 Oct '21 - What is MS?

10 Oct '21 - Fatigue

9 Oct 21 - MS & Memory - Brain Fog

9 Oct '21 - "Thriving Over Surviving MS" (Podcast)

August - October '21 - tweaking and updating a lot of MS posts across the board... an ongoing process!

2 June '21 - Online Friends 

2 June '21 - MS Blogs

26 May '21 - Mal's Medications

26 Feb '19 - What IS MS?

19 Feb '19 - Slight Hand Tremors

16 Feb '19 - Mal's Online MS Resources

12 Feb '19 - MS'ers Celebrate the Little Things

10 Feb '19 - How MS Began For Me

10 Feb '19 - Online Friends Are Real

9 Feb '19 - #This Is MS

31 Dec '18 - Look After Yourself

4 Dec '19 - How To Be CURED of Any Illness!

2 Dec '18 - MS and Bowel Problems

30 Nov '18 - Asking for help is OK (updated)

29 Nov '18 - Foot Drop (updated)

3 Nov '18 - Mal's MS Leg 'Twitchies'

4 Oct '18 - The Sadness of Former Friends

6 Sept '18 - Popping out to the shops

4 Sept '18 - a blog post from me

25 Aug '18 - 21 'Comebacks' to Use If Someone Says, 'But You Don't Look Sick...'

23 Aug '18 - 15 'Code Words' You'll Only Understand If You're a Spoonie

17 May '18 - Asking for Help is OK

12 May '18 - Staying Social with MS

7 May '18 - Managing MS Fatigue

3 May '18 - Online Sensory Overload

27 April '18 - MS Speech Problems

24 April '18 - Tears Are OK

10 Feb '18 - The Forgotten

6 Dec '17 - an encouraging dream

30 Nov '17 - a new MS blog discovery!

12 Oct '17 - Hospital Bag

23 Sept '17 - various articles and posts

20 Sept '17 - Some days are better than others

20 Sept '17 - MS & Depression

20 Sept '17 - MS & Isolation

20 Sept '17 - MS & Nausea

11 June '17 - York Gumtree = MS?

3 June '17 - I really can't complain

1 June '17 - Some MS Facts

Article - The Spoon Theory

4 May '17 - It's not going to get any better 

Article - MS & stress 

20 April '17 - MS itch

19 April 17 - multi-flavoured walking stick

Article - The Isolating Loneliness of Chronic Pain & Invisible Illness

18 April '17 - Psychedelic walking stick

15 April 17 - Mal, MS & guitar 

14 April '17 - MS Diary

14 April '17 - Brain zap II

Article - A-Z: 35 common MS terms

13 April '17 - brain zap

12 April '17 - confused... focus? (Brain fog)

11 April '17 - a walking stick

11 April '17 - MS Misconceptions

6 April '17 - How to survive being diagnosed with a life-changing illness (repost)

5 April '17 - MS and Heat 

Article - MS Lifestyle considerations

Article - But you don't look sick?

3 April '17 - Autoimmune Disease 

30 March '17 - My prescribed medications 

Article - MRI and MS 

Article - Exercise at home when fatigued 

27 March '17 - Fatigue & article

Article - Brain Health: a guide for people with MS

17 March '07 - Foot drop

17 March '07 - Sleeplessness / insomnia sux 

15 March '07 - MRI brain scan and lesions 

15 March '07 - slight hand tremors 

14 March '17 - A balancing act 

14 March '17 - The dizzies / the spins 

13 March '17 - I miss the old me 

13 March '17 - Top 10 Things to Tell Your Doctor If You Have MS 

11 March '17 - Some positive quotes

10 March '17 - Moodiness 

10 March '17 - MS: Relapse and Remission 

3 March '17 - A 'good' day

2 March '17 - Adapting 

28 Feb '17 - Brain fades... brain fuzzies

24 Feb '17 - Grief

16 Feb '17 - Dizzy fingers

14 Feb '17 - This heat affects + Telling people about my MS + 101 ways to describe MS (blogger's reposts)

13 Feb '17 - and then... more meds

11 Feb '17 - Guys with MS?

8 Feb '17 - Feeling a little... flat 

Video - Being an expert patient

7 Feb '17 - Friends can be frustrating

7 Feb '17 - Challenge and Overcoming (a blogger's repost)

6 Feb '17 - First thing in the morning

6 Feb '17 - My all-time favourite colour is the MS Awareness Colour!

Article: New blood test can identify types of MS and if treatments are working

31 Jan '17 - one day at a time

25 Jan '17 - how are things for me at the moment (now I am diagnosed)?

13 Dec '16 - demyelinating disease

7-31 Dec '16 - how things seemed at first

12-21 Nov / 1 Dec '16 - a weird reaction?

4 Nov '16 - when did I first start noticing things? 

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Peas be with ewe 
Mal

Tuesday's Tales on Wednesday

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G'day! Just a quick one in passing. How has your week felt for you so far?

My health has been generally OK, thankfully - fingers toes and (edit) crossed. "You adapt".

I really appreciated and enjoyed being able to hang out with my only brother (he's 10-years older than me) last Saturday... the first time we were able to, after eight weeks of Covid Lockdown.

Catch 22 for my middle son (who turned 25 last Friday)... he spent his Birthday weekend working at our Mt Panorama Motor Racing Circuit for the 'Challenge Bathurst' event, in bitterly-cold wet and windy conditions... while he assured me he was well rugged-up against it all, apparently today he's come down with a cold! D'oh!

My two goldfish, 'Thoon' and 'Katia', are keeping very well - we've two months together already; that's gone by so quickly. Love 'em.

Grammarly is an awesome spellchecker. This new laptop is so good - I am so thankful! I had gotten so used to the old one being so slow and clunky! It's been recommended that rather than attempting to get that old one fixed, it would be a waste of time (obsolescence etc - cf. below)... to purchase a new much-better one would simply be more efficient. I am getting so much done on this new machine now - for which I am so grateful.

The laptop is a Lenovo Ideapad 320.

I woke up after a late afternoon MS "Nanna Nap" on Tuesday; "What time is it? 8 am or pm?", I asked myself upon waking, with sunlight still showing thru my windows... 'twas 8pm in the evening... I was momentarily confused! Oh thanks, Daylight Savings Time. D'oh! I'm sure I'm not the only one this has happened to, either... Oh, you've got to laugh at yourself.

During the T20 World Cup Cricket Final on a very early Monday morning (which the Aussie won, happily!), my toilet decided that was a great time to get blocked and start backing up! The plumber was here Tuesday morning, and fixed it simply and quickly, thank goodness... I only have a small 'normal' plunger (which obviously didn't do the trick for me this time) - I need to get myself one of these 'Mega plungers' (laffs at himself)... like the one on the left, not the one below... [laffs]. Having a blocked loo and Colitis is not a good combination to have going...

The Cricket started at 1am here for me - ie. "ridiculous-AM". It was hilarious watching this game streamed for free from India (it wasn't on free-to-air here, dammit!), using my Tablet (which is fine to just watch something on... interacting with it at the same time is a nightmare!); the games' commentary was in English, but during the overs breaks, the ads were in Hindi!

That was a very surreal experience... something I very rarely do... live-tweeting and interacting across the world during the game! Fun tho. Glad my MS 'dizzy fingers' held out long enough for me to be able to do it on my Android Phone.

My new phone is going all well. I think I've finally got it set up how I like/want it... I'm still having issues with the whole Andriod touch-screen thing tho, but it's so much better than the ancient dinosaur I used to have, thankfully.

I accidentally took a screenshot of it, at ridiculous am this morning... how, I don't actually know! (laffs out loud).

I was randomly thinking about 'Planned Obsolescence' last week; sitting in a taxi into town on Friday, and driving over some new roadworks, the driver talked about why road surfacing does not last very long anymore - simply so the contractors have a future ongoing job! Then there's the whole old laptop story as well... the irony is not lost on me at all.

I've been wanting a sew a simple cover for my Bluetooth Keyboard (to keep the dust etc off it when I’m not using it)... just to sew up an old tea-towel will do the trick... but I haven’t really tried using my sewing machine with my MS hands for about 2+ years... hmmm. Hand sewing is out of the question. BUT as it’s just a quick simple little thing, maybe a bodgy wonky hand-sewn old tea towel might do the trick, while I’m watching some cricket on the TV? (laffs)

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Random story... about 3-4 months ago, I finally finished a block of chocolate that had been sitting in the back of my fridge for about two years... the thing is, that this particular block was laced with THC (used only for pain relief if/when I needed it, I swear! lol)

The last time I used it for effective pain relief, is when I suffered extreme pain from a blood clot in my leg (about 2-3 years ago), which saw me stranded on my sofa, unable to walk.

This time, however, I thought I would just finish it off and be finally rid of it. I haven't done anything like that in absolutely years! So I ate one piece (with food) - and nothing really happened - I wasn't in pain, I just wanted a small buzz, and be finally done with it. A few hours later, I ate the remaining pieces (about 5-or-so small pieces), thinking nothing would probably happen, and then I had no future excuse to have it laying the back in my fridge, forgotten.

Well... the result, hilariously: I was 'under the influence' of the THC for THREE-AND-A-HALF DAYS straight (laffs out loud)! I kept thinking I'd sleep it off, but after 3-1/2 days of being stoned, I was so totally over it, I admit.

I was so stoned, that I managed to listen and enjoy to an album I had waited 30 years for, until this exact moment transpired (was unplanned)... the wholly bizarre "Trout Mask Replica" by Captain Beefheart (from 1969)... the perfect weird music to enjoy under those exact conditions, I can assure you!

I didn't plan for it to happen so powerfully or for so long, honest! I guess because I hadn't had any recreationally for absolutely years, my tolerance was absolutely zero... thank gawd I had no visitors nor had to go out into town anywhere!

I can laugh about it now, but at the time, especially after just two days, I thought I'd done something crazy to my brain or...?! Sure, it was fun for a while, then I just got tired of the effect after a while... 3-1/2 days! Like, "Can I be straight again now, please?"

I assure you, it's not something I plan to do again! But it was all a fun way to relax, in the privacy of my own home. No harm done.

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On another track...

I don't usually read any webcomics at all (I'm not into anime or any of that guff, either). But this particular comic, "Erma", is delightful... even tho the subject is kinda bizarre for my tastes, the personalities of the characters the artist has created are simply great.

Please keep in touch. I can feel pretty isolated at times - thanks MS!

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Peas be with ewe 
Mal

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