Downer Days PMR, GCA, Fibro

[Dream21]

I have been handling this mess pretty well for the last 2.5 years, but lately just depressed and frustrated. I have major exhaustion, pain, cloudy brain, depressed ....just miss my outdoor lifestyle. I am thinking is this how I will always feel. I got these diseases at 56. I know some of you have suffered much more. Sorry to complain, but I am not rebounding. I have been spending most time at home feeling ill. I love to hike, swim, camp, enjoy exercise. I do like this new lifestyle. I know ... Waaaa! I cannot seem to get out of this discouraging place. Any ideas?

[TJ03]

I'm with u. I got this when I was 40 I'm now 42 and it's just wearing me down and I miss my old life so much. Ppl say accept it as the new u but I can't I'm 42 I have young kids I will not lie down and accept it.

I understand what u r feeling. I don't know that I have any advise to help but God I know how down I am with it all. Ppl have said to me it's something we adjust to and get good times and bad. Is there a cure... I've been told that it can be a short term thing ... a few years. I'm praying it is.

I hope this helps in some way at least to know ur not alone. It sucks big time it's like a loss and being in mourning.

Tj

[DorsetLady PMRGCAuk volunteer in reply to TJ03]

“Ppl say accept it as the new u but I can't I'm 42 I have young kids I will not lie down and accept it.”

You don’t have to lie down and accept it - but it will take longer to get through if you don’t “accept” it is what it is - and adjust your life - at least temporarily!

I appreciate you have young children so it’s much more difficult for you than for others, but you CAN make it a little easier.

Yes it is temporary (for majority) but unfortunately nobody can say exactly how long - it will decide, not you. There is no point railing against it, that just makes life more difficult, not less.

I know that’s not what you want to hear - but that’s how it is.

[PMRpro Ambassador in reply to DorsetLady]

Ditto everything DL says - I won't write it all again...

[Dream21 in reply to TJ03]

Thank you for your empathetic reply. I can relate to everything you feel. I am so sorry you are so young and have children. It is a loss of self. The outdoor lifestyle and athletics is a large part of who I am. I am with you. I hope it will lessen in time. I wish for you the same thing. A quick recovery. I am sure you are teaching your your children how to persevere when life is challenging! Thank you for your support!

[KinnearD]

I read your post earlier feeling stuck myself. Early days just caught in expectations from my loved one. Little things like moving on dinner, lights on, the atmosphere of home that I bring and I was simply stuffed!! Sone self-pity even but just needing someone outside of myself to create the trappings of the good life. Well, it didn't happen, and escalated and he said I was always complaining. So I wept and then started watering the Spring garden and then gathered some tapas and a glass of wine and moved out from my bed to the deck. He joined me....mosquitoes a buzzing....heap, it's hard...I need to identify and reindentify those things that sparked joy pre PMR....for me...sunsets, nature... quiet glass of wine or two midst the curb on carbs...connections. It is a hard lonely road....but joy breaks through.

[Dream21 in reply to KinnearD]

Thank you for your reply and support. For me, it seems to be like a roller coaster of OK day (health) and strong at home days. Maybe the emotionally journey is the same. That sense of loss and frustration comes back. I need to work through it again. I appreciate your reply.

[DorsetLady PMRGCAuk volunteer]

Hi,

You can still enjoy the outdoors; you just have to do more planning beforehand and take things easier. Walk instead of hike; swim, but less than before; exercise, but not so strenuously or too repetitively; camp, in a van not a tent!

Life still there to be enjoyed, just more sedately.

[Dream21 in reply to DorsetLady]

I agree. Some days I am so exhausted that getting around the house takes all my energy. I think going through a long period of bad at home days has led to more frustration and sadness. I started turning it around today. I am headed in a more positive direction. Your support is so valuable. Thank you!!

[SheffieldJane]

For a start you will not always feel like this. That’s just the depression talking. A good goal is to work towards the day when you aren’t so symptomatic, by keeping a level of fitness going. I found a fitbit very useful at this stage. I went for daily walks on the flat, just round the streets and parks where I live, gradually increasing my steps. At one point I was doing about 13,000 steps. I was much more symptomatic than I am today. I found that it motivated me and improved my mood. My stamina was good unless there was an incline or a hill. My husband and son would join me sometimes. My pace was slow, but I really learned to notice nature and the changing seasons. Something, as a frantic, working mum I seldom had time to do. Try it? 🌳☘️🌿

[Dream21 in reply to SheffieldJane]

I love your Fitbit idea. Then I am focusing on steps and not my old “normal”. With the fibromyalgia, I have chronic fatigue. I can exercise 15-20 minutes. Due to Fibro, I need a day or 2 at home to recover. I guess it is getting out and just enjoying the little things, like you shared. Thank you for your helpful reply.

[Suet3942 in reply to SheffieldJane]

Good on you Jane. I do the same thing. X🌸🌸

[Marilyn1959]

I started to come to terms with the lifestyle change by likening my situation to a child with special needs, and how (having been in teaching for 37yeats) I would make adjustments in my approach with an individual child to access the curriculum at their level of need. Smaller and shorter goals were set, so that a sense of achievement could be felt and celebrated regularly. I simply applied the same logic and approach to my current situation, since at this moment in time PMR means that I have special needs.

If a child with special needs, or any child for that matter, does not understand the concept we break it down into smaller more manageable steps, tailor made for the individual. We have patience to explore multiple ways of getting the desired outcome allowing more time for the child to achieve it. Then by golly do we celebrate!

Why not treat yourself as having special needs at the moment starting with having realistic expectations. From this setting yourself very small achievable short term steps and celebrating when you have achieved them. I have tried it and it has helped me to focus on the positives and refocused me during the times depression has come knocking at the door.

[Dream21 in reply to Marilyn1959]

What a wonderful idea. I can relate as I taught for 30 years. Exactly, how I approached teaching. That was a terrific analogy and I am going to start that in a calendar. Thank you!

[piglette]

We have to accept that we have a life changing disease. We can’t just take some pred and we just get better unfortunately. There can be a lot of ups if we put our minds to it. There are things we could start to do that are less strenuous such as painting and lots of other things. We could become writers even. I go swimming still which I love. I just stop if I start to hurt. We could be in a much worse position I always think, watching those poor people in the Philippines whose houses have been submerged in mud.

[Dream21 in reply to piglette]

I agree. I do a gratitude list at night. That helps. My biggest challenge has been overwhelming exhaustion. I agree that developing hobbies is important. I do jewelry making at home and read. I told my husband on good days, I am going to think like I am a tourist visiting San Diego, CA. That is where I live and find some different stores, museums, antique shops...to explore. These would fit what I can do on good days now. Thank you for replying. All the support from all the wonderful people on this site is so wonderful.

[Omanain]

My son bought me a virtual reality head set yesterday! He thought it might be a substitute for going out!!

[SheffieldJane in reply to Omanain]

He sounds like a perfect poppet.

[powerwalk]

Most of us have been there - the "down" days - when it all just gets to us!! I've just been panicking how to refuse to go on a night out from work - I'm sorry I just can't. The fatigue is just tooooo much to cope with - without trying to work all day and go out then for dinner at the end of a long week!!! I'm not able to do it. Just had to say that I had something on - nobody would understand this fatigue which is so crippling. That gets me down. You will feel good again - you will have your good days - unfortunately when the bad days it it can feel overwhelming. Best wishes.

[Dream21 in reply to powerwalk]

Thank you. Everything you said is so true. It is so comforting to hear other people experiencing the same thing. It definitely helps to alleviate the isolation you feel at times with this disease. You were right. It is totally acceptable to say, “No”. At night I never make plans. It is the lowest energy part of the day. Best of luck to you. ❤️

[Hidden]

I can relate to what you say. I also miss my active life. My entire life I've been involved with sports, physical activities and regular exercise all of which came to a grinding halt seemingly overnight with PMR/GCA.

[piglette in reply to Hidden]

It could have been much worse on the other hand when you look at what other people are suffering. Even those not ill having their houses destroyed by mud slides.

[Dream21 in reply to piglette]

I agree others have it worse, but it is important we all acknowledge our own suffering. It helps us move on from the negativity that swirls in our minds.

[Dream21 in reply to Hidden]

I know. I empathize with you. Being athletic is a huge part of my identity. I am learning to adjust. I do well mentally well for a while and then “BOOM” I am back to grieving. Best wishes for your journey.

[Nitrobunny]

It’s definitely all about adjustments and expectations and most of all having patience with ourselves. Shortly before being diagnosed in 2004, I was going to the gym before work five days a week and running a minimum of 7 miles a day. I was very physically active, skiing, surfing, ice skating and roller blading. 14 years later I have been much worse landing in the hospital with GCA twice in early 2016. That experience was terrifying. I had the flu Christmas week last year and again landed in the hospital and nearly died from the flu of all things. There have been some terrible lows and I grieved for the very active life I once had. Fast forward to now and I’m doing the best I have been in over a decade. I’m literally down to a low dose of prednisone and my thyroid medicine (which once properly adjusted was life changing). Along the way I learned to be kind and patient with myself. If I wasn’t getting everything done today, that’s okay it just had to wait. I learned lots of life hacks and I learned to ask for help when I needed it. I learned to seek out and utilize alternatives to traditional medicine. I am a huge believer in the power of the human touch and I have a wonderful massage therapist who is extremely helpful to me. 14 years has been a long time to deal with all the autoimmune issues I have but it has gotten better. My last three sets of lab results could not be better including the inflammation markers, ESR and CRP. I never thought I’d see that happen. I actually feel quite good. I still wake in pain every day and it takes me an hour to get my joints behaving so I may begin my day. At the end of the day I am spent and my joints and muscles complain. I literally limp off to bed especially if I was particularly busy that day. For the most part flares are brief and responsive to prednisone. But I rest well and my sleep is restorative. The art of preparing to sleep is a whole post on it’s own. I am grateful for every new day despite the fact I may not be able to do the things I want to do because every day is another chance to get it right. I truly wish you the best and pray your good days outnumber your bad.

Best ~

[Dream21 in reply to Nitrobunny]

Thank you so much for your caring reply. It is so wonderful you are doing better. It reminds us when we struggle to have hope. ❤️