Thought I was coping really well, why the backslide?

I've viewed my illnesses pragmatically over the years. I've researched and learned and taken appropriate steps to manage pain and fatigue. I was diagnosed about 4 years ago. I thought I had a leg up on adjusting, 'dealing' with the changes in my life.

I bought myself a scooter and even though I'm only 45 years old, i use it without reservation when I need to. I stopped working full time... i had an accelerating career that I enjoyed. I only work part time now and from home... for a very small fraction of my previous earnings.

I pace myself now. I have slowed down. Way, way down. Everything I've done has been with resolve and determination to make the best of a bad illness. I've done all the 'right' things. Supposedly.

So why am I suddenly and deeply grieving for my old self? Why do I feel depressed and sick of using the stupid scooter and want to walk like a regular person and not feel like a 75 year old, and be able to run or lift more than 5 lbs, and visit with friends without having to recover for 2 days afterward, and dance, ride a horse, be intimate with my spouse..... and on and on.

I'm really struggling. I haven't felt this down since the whole pain-fatigue-pain-fatigue thing started. The pain. Every darn day. Pain. Every muscle and movement is pain. Every decision I make is all about pain and how to manage it.

Let's not forget the mind-numbing and crippling fatigue. No, we could never forget that.

I'm so tired of it.

BTW, I am on meds and see my doc regularly. Meds have just been increased to try and achieve better quality of life. I'm waiting for that to kick in.

What to do? I'm not sure anymore. Suggestions will br welcomed.

Booklvr,
It's completely normal to feel this way. Don't beat yourself up for it. You have done all the right things and for that you should be proud. Sometimes despite doing everything right you can still feel this way. I can see the frustration and depression in your post. Depression (even the word sounds miserable) but.... It's OK to feel this way.

The good news.... You still have drive, you still have fight, you still have the desire to want to feel better, because if you didn't you wouldn't be here asking for advice. Everyone here is great at giving positive support, but sometimes you need to talk to someone whom was trained in this field. Someone whom can offer tools to move you through this part and on to better ways of thinking.

This could be a psychologist or psychiatrist. Someone you could trust and feel comfortable with. Remember there is no shame in asking for and receiving help NONE.

The grieving the anger the loss of self can be fixed. You can do it. Your stronger than you know and deserve to feel better.

Please let us know how you're doing. We're here for you.

Take care
Michael

Thank you everyone for the response. I will makr an appointment to speak with a therapist. I think that's my best option at the moment.

Today is a completely overcast day outside. Totally grey. This weather makes me flare up so I'm on the couch. Again. Winter is really hard because i am in flare ups most of the time.

It helps a lot to get support from this board. Many thanks to you!

I hear you, Booklvr. I feel SO much the same way!

I'm going to visit a friend for a week next month, and what is my mind occupied with? Not happy anticipation (well, kind of) but mostly the many things I can't forget, things I need to make my visit somewhat doable.

Getting down to the ground is something I can't do anymore, so I have 2 reachers - one for "sanitary" needs like pulling up my underwear, the other for picking up everything everywhere, like the reading glasses that slide off their rope and fall on the dirty floor. I guess I'll have to bring them both.

I can't hack regular pillows.....so I use a buckwheat-hull pillow, but it's heavy and bulky - forget it or take it? Maybe I'll just stuff a pillowcase with towels or something...I've done this in hotels in a pinch.

Even checking my suitcase at the curb, I'll have to carry some stuff around the airport and on the plane (there's no way I'm trusting the airline with my meds, supplements, lotions, etc!) Then I'll need water, snacks, book, sweater, purse....doesn't sound like much, but 2 pounds is a lot for me, and increases my pain/sickness/tiredness.

And this is just the beginning....

It gets so old, ALWAYS having to be careful of how I move!! Even first thing in the morning, before I'm truly awake...my body starts stretching automatically, and if I don't reign it in, I'll get a cramp in my calf or foot.

I consider us the Walking Wounded.

Good luck to you and hope your outlook improves...we're all together in this mess!

Debbie

Acheybody, where did you get your 'reachers'. I have a hrck of a hard time bending. My back is completely shot so bending is really painful. I can still handle the sanitary stuff (not always easy and always painful) but to pick something off the floor is tough. I move like I'm 90 yrs old and arthritic.

I hope you enjoy your time away. I am going away soon too. A week in sunny California. Will do me good! I'm like you though regarding carrying luggage. Anything over a few pounds and I'm hurting.

i am feeling better today. Partly from the support on this forum and partly from my hubby, who is wonderful. He said he would move to a sunnier climate in order to help me. What a nice offer! This is a man who is born and bred in the same city and who is uncomfortable at the thought of moving across town let alone to another country! He is the ultimate home body and a move would be a huge sacrifice for him. Just knowing that he is willing has lifted my spirits tremendously. I think we are not at a place where we can really do it because of work. However, now I know that if it becomes a must then there are options.

I'm not very knowledgeable on S.A.D. but will do some research. A big problem for me is barametric pressure change and we get a ton of that in our city. In fact, it is a unique fluctuation where we live.

Booklvr,

I'm glad your mood is better today. How nice to know your hubby would relocate for you! :) I know when my hubby goes out of his way to show he cares, it's like the clouds parted and the sun came out!

Finding good reachers has actually been a big headache for me. The best ones I inherited from my parents, but look as I may, I can't find any that durable. The ones I use for everything are 32" long and look like a silver stick with a black handle and "claw." I also have a couple of the 26" size.

I ordered 2 online and had to send them back, they were so flimsy....it's hard to tell from the pictures. If you google "reachers" or "reacher grabbers" you'll see there are a million of them out there. I read in a review that Duro-Med makes a good one, but when I ordered it from Amazon, it had some other brand on it, and was not satisfactory.

Then I went to medical supply places and finally found my current one, which is good enough to get by with, although the block of material at the end, that contains the magnet (and meets the claw) fell out after a few months, and won't stay super-glued...but it's not absolutely necessary. Of course, I am hard on it - use it constantly, for everything from putting on my shoes to picking up my purse when I drop it. It has, "Sammons Preston Rolyan" on it.

So good luck, and if you do find a really good one, please let me know where from!

Debbie

I agree with the bright lite therapy. My doc prescribed mine when I lived in MN, and my insurance paid for it. I used it every morning for 30 mins.

If you can afford it, go buy yourself a nice bundle of bright yellow flowers and put them in a vase where you can see them throughout the day. If you can tolerate scents, get a nice smelling lotion or candle. Take a warm bath, then treat yourself to some dark chocolate with caramel. That usually snaps me out of it for a bit. I feel the same way about once a week. I've been in my flare-up for 9.5 weeks, and once a week I break down and cry and think I can't go on...but I do.