The challenge of “getting on with your life”

They all say: “getting on with your life”
is one of the best ways to heal from TMS. This is really hard for those of us who really got hit hard with a lot of symptoms. One of the most troubling is not being able to walk unassisted. And,not having full access to your hands. I have both of these.

I’ll admit, I’ve done my fair share of sitting on the couch just hoping changes will come if I visit this wiki, listen to podcasts and journal. And I’ve really been doing a lot of that lately.

And it has changed the inside of me. A whole lot.

But physically it’s slow going. I’ve done a lot of thinking about “getting on with my life,”’and how frustrated I’ve been when people say that. HOW?! I can’t GO anywhere?! ( At this point, I also have agoraphobia, which if you don’t know, is fear of leaving the safe place of your house. It’s a form of anxiety).

So I realized that I’ve got to CHALLENGE myself somehow. Stop being a whiner and think outside the box!

And voila! Some ideas came. I had a great day today.

I colored my own hair. (Which was quite a feat. Because I had to stand longer than usual. And like I said, it helps if your hands work better than mine. But I did it out of sheer stubbornness. I felt like it was a battle and I’m going to win. A turn-around from my victim mentality.)

The reason I picked coloring my hair is because feeling like I look bad keeps me from wanting to do anything. It’s an excuse to not leave the house. A trickle-down effect. I look bad therefore I can’t go out, therefore I can just give up.

So yeah. My hair looks awesome now, for $11 (better than the $300 job I had last at the salon where she didn’t even do what I asked.)

And I also cut my own hair (which I learned to do during the pandemic.) So I feel amazing!

After that, I walked my laps in the house (4th day in a row!) I can feel some strength coming.

And I went out onto the front porch and stood there. (Baby step #1 for my plan of getting out of the house). I locked up as I walked to the front door. But, I used the Claire Weekes floating technique to power through. (Stubborn little TMS lizard brain! It’s not dangerous for me to leave the house!!!)

So, see? You CAN “get on with your life.” Oh yes, you can! In any condition. I imagine you could do so even if you are bedridden.

What are some of your stories for Getting On With Your Life? I’d love to hear!

 

I am SO proud of you!
My husband used to have to help me with personal care, and then we’d walk 2 houses up. My neighbor would come out and cheer me on.

 

Truly fantastic,@Diana-M!

As you know, my husband and I do batch cooking. We cook up a load of vegetables which we use as a base to make 3 evening meals, e.g. a stir fry, a pasta dish and a tikka masala curry. When I was bed bound I sent for a small chopping board from Amazon and had my husband bring me that and a knife on a big tray with the vegetables... and, propped up semi-recumbently with numerous pillows, I peeled and chopped vegetables in bed. (I was in so much pain the whole time from my lower back, pelvic and buttock regions that I sobbed my heart out most of the time, but through the tears I gritted my teeth and got on with it.)

Another time, I had horrendous wrist and hand pain... I couldn't do any vegetable prep, but every day I imagined doing it instead. The pain eased a bit after a while and I found that with a support on my wrist and thumb, I could use a vegetable peeler to peel carrots and potatoes, so I did that. Then later, although it took months for my wrist and hand pain to improve enough to do so, I gradually returned to being able to peel any vegetables, not just carrots and potatoes.

As I've also mentioned to you before, I started off, after being bedridden for over 7 months, standing to put the pots and pans and dishes away in the kitchen cupboards after my husband had washed them and they'd air dried on a dish draining rack. But then, after a while of doing that, I added putting our clothes and bed linen washing out to dry on airers. We have a spare room where the airers and dehumidifier are and I got my husband to put the laundry basket on a small chest of drawers that was at the right height so I didn't have to keep bending to reach the washing. And from there I eventually went on to standing to fold the dry laundry and put it away in the wardrobes and chest of drawers.

Analysing it now, with my baby steps I see that I concentrated on doing bits and pieces to help my husband with the household chores. My husband still does the cooking, but I also do other prep, e.g. weighing out the pasta and other ingredients for our meals, putting the plates and knives and forks out. (We jokingly refer to me as being his 'Prep Chef'.) We have our weekly grocery shopping delivered and I now always put them away in the kitchen cupboards... At first I could only stand long enough to put the chilled and frozen stuff in our fridge freezer and then I had to rest, but then after resting I went back to the task and I'd put the rest of the shopping away (my husband was under strict instructions not to do it for me unless I asked him to help). I was lucky that my husband accepted that some days I could do things and some days I couldn't and he just went with the flow... and still does to this day.

Like you, for exercise, I started with walking around my house. I now also get some extra exercise by walking up and down the stairs when I don't need to. Pre bad TMS symptoms, we'd leave stuff that we needed to take upstairs at the side of one of the bottom steps to take them up when we otherwise needed to go upstairs to go to the bathroom or to a bedroom to get something, but now I always take stuff upstairs when I don't otherwise need to go up there. (At one time, I couldn't walk up or down the stairs - due to ankle pain, foot pain, thigh pain, back and buttock pain etc... so the latter is big progress for me.)

To get more movement/exercise into my day I found this book, called 'Movement Snacks', really helpful: https://www.amazon.com/Movement-Snacks-Creative-Guide-Inviting/dp/0578333511/ref=sr_1_1?crid=2WMOTNOJ88QL9&dib=eyJ2IjoiMSJ9.Qp85tuH3qqeO6fMGLFCXXA54dPKZkWHy3mmOhI_0k9uavMykFoE73cbMcyQ8DT85FBbFlCy3T0_39KkOjlVDatry7IqFOdBqFMd-2_rG9BhcJY75lfE6uH3Dsl3zHff6qqEa_vxX7YAUKSSbP1dKdg.ij6pYVtmklKBrp_tvYPnZW1IwhKrysoN-6pEmHZh8gU&dib_tag=se&keywords=movement+snacks&qid=1726828815&s=books&sprefix=movement+snacks%2Cstripbooks-intl-ship%2C137&sr=1-1 (Amazon.com)

I know that not being able to get out the house due to physical pain and other physical symptoms or due to agoraphobia really is no laughing matter, but nevertheless I used to watch this clip which made me smile and actually helped me tackle and get on with my baby steps...

 

Thank you, @Cactusflower ! I know some of the things you do now: traveling and taking long walks. And it all started from your baby steps of getting on with your life. You are an inspiration to me! I like how the neighbor cheered you on. I’m afraid of my neighbors seeing me like this; and afraid of having to explain what’s wrong (which who will believe?) so I have some work to do with my attitude there. I think it’s great to have baby steps that will lead to your next steps. That’s what I realized this week. It doesn’t matter where you start, it’s keeping your eyes on where you’re going.

So did you expand your walk from there?

 

@BloodMoon
You were so brave! And determined! I didn’t realize how hard you fought to get back to being well. I like how you used household chores and going up the steps as a workout routine. I have been unloading the dishwasher and putting away the dishes for going on 3 weeks now. I am shocked how rapidly I have gained strength from this. Even my balance has improved. But more than that, my confidence and pride. I think that’s the most important part. Thanks for the videos and suggestions. So helpful!

In general, it’s still so mind blowing to me that a person can go from being fairly normal and strong to so weak they can’t sit up in bed or walk or shower (that’s really hard for me still). And all because of anxiety and repressed emotions. I just still can’t believe it, even though it has happened to me. I am only too thankful to have the wiki and my friends here to show me the way out!

 

My neighbors needed to know my condition because I’m sometimes home alone for ways/weeks and they were coming in to help with cats or on call if I fell.
Like @BloodMoon I started standing by chopping vegetables. 5 mins at first -my brain wanted me to go back to bed so bad! I’d sweat and have seizures or try to faint and my blood pressure would raise and plummet (a fave TMS trick), auditory and visual symptoms, need to use the bathroom (shocky and stabbing pain on top of this) but nope, I’d stay. Sitting was just as bad. I’d cry through meals eating only tiny amounts. I was at 120lbs and I’m 6’1…
My TMS coach and psychologist would help me sitting we’d meet on Zoom and I’d sit for as long as I could and they would continue and encourage though tears and seizures they were non-judgmental (I tried a few, a few were judgemental but two were not!)
One I had seen as a life & excercise coach before I knew about TMS -we discovered it together (she has since become a TMS coach!) and so she knew that before being bed bound I could walk 3/4 of a mile. So bit by bit she encouraged me. I walked with my hubby or neighbor until I had a month with no seizures on walks then alone. I started interval training to speed up walks 10 seconds fast every minute. That got me stronger to walk a mile…
It’s now 2.5 years and I walked 3.2 miles consecutively on Wednesday and 2 yesterday with a bag of groceries (just 5 lbs, but still!) including up a 3 flight outdoor rickety stair case up the hill. Tonight we are traveling to see some bands play and driving home after (stamina and exhaustion are latest symptoms).
I still get pain (it’s way better), and deal with real (not TMS) physical pains but like is too short not to have fun! I still deal with a host of psychological triggers and anxiety going out, but I also don’t give them too much power. They are there, I deal with them and move on.
Before my pain I was lifting 75 lb and moving 150 lb boulders regularly and leg pressing 300 lbs, dancing on stage for up to 6 hours consecutively non-stop… crazy isn’t it!

 

Wow! What a great story! It’s so amazing, all that you’ve overcome in 2.5 years! The thing that keeps hitting me the hardest is how important it is to use your WILL to overcome the pain and the obstacles. And this requires HOPE in a future you feel you deserve. You ultimately have to love yourself. Giving up and just living with what’s happening is like saying you’d just rather die.

 

At the point of me deciding to peel and chop vegetables in bed, I was so distraught and furious at having to lie there once again just listening to the radio all day long (I'd been bedridden previously for over 4 months) that I internally 'yelled' at my brain "f*ck you, you're going to have to shut the whole of my ******* body down if you want me to stop doing things!!!" It was defiance. Defiance plus using my will.

 

I love this!!! That’s how I was feeling yesterday. I think that’s the place you have to get to. You just have to want to take back ownership of your own body.

 

I think I started to turn it around when I made myself walk down the outdoors staircase, walk across lawn, and go down and back to the mail box to get the mail and take it back into my house. My world has been expanding every day since then two years back when I had a TMS relapse. Now I'm out hiking, going to the gym and bouldering every day. And I thought I had it bad! But when I compare my situation to yours it seems infinitely less serious. But it sounds like TMS is definitely a microcosm-macrocosm type of experience where you have to work from the tiny back to the large issues of mobility and self-care. You certainly sound brave to me!

 

very inspiring Diana,
I came here to find an inspiring post and definitely found it.
I'm going to do this today (not paint the hair, I'm not that brave.)

 

That makes me really happy I was an inspiring story for you, @Jettie1989 ! That’s my wish. Don’t give up, no matter what. We can all inspire each other!

 

Thanks, @BruceMC ! You have been an inspiration to me and I’ve really benefited from all your comments on the forum.

 

Update today on “getting on with your life”— When my hands started cramping in January, it was as I was recovering from a pretty intense first bout of COVID. I was coughing my head off for at least 6 weeks when it happened. I had been so afraid of ever getting Covid, I know that was a factor in ramping up my fear. I also lost them as I was finishing up a big writing freelance project that was late due to being sick. So I was nervous and stressed.

After that, strangely enough, no writing assignments came in in their own (they usually do). And I didn’t look for any because I honestly can only type with my right hand (and slowly). I used to type like lightning. I explored other ways to work—maybe with dictation— but it didn’t work well. In the meantime, I sunk into depression.

Last month I got a couple of little assignments (which I was brave enough to accept) and I managed to finish them with a little bit of dictation, a little bit of typing and a lot of ingenuity. I typed with my thumb on my left hand and I used a lot of cutting and pasting, too. At any rate, my client loved it. This all was HUGE for me; giving me back some hope and some purpose. Working has always made me feel “right.” I’m so lost without it.

This week I have THREE assignments! I’m refusing to be worried about it. I’m going to stay calm and own it. This is how you take back your life. You tell your lizard TMS brain, “Nope, Can’tstop me!”

I really liked this video I saw from Dan Buglio yesterday. I think it all fits in with this taking back your life. Move forward—Because it’s all about attitude and beliefs. And doing the internal work of healing. The symptoms are the last to go.