A little happy, a little sad - Fibromyalgia Acti...

Fibromyalgia Action UK

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A little happy, a little sad

Hurtingmom profile image
18 Replies

I came to a place I have gone for the past 6 years. It is obvious to me how my health has been affected since last year. I am trying to take it much slower and use non- public transport due to the heat and the changes in my body. The morning went pretty well, took Lyft( do you have that in England- never use it at home as I have a car) to my tour. I felt a little shaky but made sure I was well hydrated and had healthy snacks. I enjoyed the tour and the people- I know the tour guide from past trips. I had a nice lunch nearby and took Lyft to another part of town. Then I made the error of walking too much and taking the subway( the underground) to the market. However, this same walk and ride would have been nothing last year. I thought I would pass out at the market but stood holding my cart in the dairy section( very nice and cool there). I paid for my groceries and got a Lyft to my rental. I have been resting 2 +hours including a warm bath and lots of water and some meds. So my point is I am happy I came- there is still a lot to do but it is very very clear to me that I must keep out of the heat, be careful with my energy, be more careful about food( my stomach has become even more sensitive than ever!) and limit my activities to the most important. I am a little sad because I think my life will always be different now. I see people older than me who still seem so vibrant( people think I am- but I have been hiding the truth except to a few- and of course, all of you!) I had made a schedule but I am crossing out half the things so I can enjoy the ones I do and see my friends here when I can. Some of them know I almost didn't come but decided to come. This could be my last trip here( unless there is some miracle my drs. find). I know I have been very lucky to travel as much as I did esp when I was younger so I am grateful that I have seen so much. I just wanted to get this out somewhere with people who understand and who have seen their own lives change. I do hope tomorrow to see something that I consider a wonder- if so, I will have to figure out how to post a photo!

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Hurtingmom profile image
Hurtingmom
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18 Replies
Keeleybee profile image
Keeleybee

Completely empathise with you. Bless you. X

TheAuthor profile image
TheAuthor

Hi Hurtingmom

I am so genuinely sorry to read that and your post has really touched me for what you are going through at this time. I want to sincerely wish you all the best of luck, and I genuinely hope that it is not your last trip out there. Please take care of yourself.

All my hopes and dreams for you

Ken

Shadows-walker profile image
Shadows-walker

Hi totally understand , I saw Dr today ,and was discussing how my upper body is racked in pain ,when I walk not so much my legs ,but I use a stick or crutch normally as I get so tired and them for support ,and I have been told I have to use my scooter more ,also I tryed to pay for aqua aerobics class today and they wouldn't let me till I have a letter from GP that it's safe for me to do it ,totally frustrated nothing is straightforward anymore ,everything has to be planned 😠

Haven't traveled much in my life and always wanted to but properly won't be able to now ,as insurance etc will be to much all my plans gone out through the window ,

Life a B**** sometimes .

Shadow.

Hurtingmom profile image
Hurtingmom in reply to Shadows-walker

The loss of spontaneity- because I don't know when I will feel so wiped out - or what is to come

Ginsing profile image
Ginsing

Thank you for your post. I have traveled widley in the last 18 yesars something I never thought would happen.

My last trip last year was both hell anad happy. I had wrong push c

hair wrong tyrers I am a large lady A lovely arab saud I was Cuddly what a flirt

I was pushed pulled bumped growled at and I remain gently passive people get annoyed more.! Would I go again possibly not I was too dependent!

I hope you manage another !

x Ginsing

Betty67 profile image
Betty67

Read your post with interes and can ser where you are coming from. Dont forget to USD some of your energy for fun things and not just important things.

Wiat is a lyft?

Hurtingmom profile image
Hurtingmom in reply to Betty67

Lyft and Uber are car services by the public for the public. You order them through apps on your phone and pay via the app. It is cheaper and faster than cabs.

Betty67 profile image
Betty67 in reply to Hurtingmom

Yes but unregulated, have heard about uber.

Natura profile image
Natura

Hurting mom...totally understand..never know when I will have energy for anything. I want to travel , but feel I will be limited by energy and inability to handle the heat. I have been inside the a/c the entire summer. Can't wait for fall. My teenage daughter wants to go to Disney. We went when she was only 5 and 7. She says she doesn't remember a lot. She is 13 now. I was lucky to not be ill then. Thank God we went when we did. I don't know how I would do now with all that walking. It is very difficult to not be sad, and to change the way you do things. I need to focus on what I can still do. Take care...

Hurtingmom profile image
Hurtingmom in reply to Natura

Yes, people say I could travel like I used to- but I know I can't. ( and these people have no idea of what I am dealing with) . Doesn't mean that I can't go anywhere but heat, terrain, travel time, food( my stomach is not what it was - whose is - but now it is really sensitive), so many things will have to be weighed or the trip will be a pain not a pleasure.

kimey007 profile image
kimey007

Hi, hurtingmom, the good thing is you can still do it at your own pace. Its taken me 4 years to listen to my body. I'm off to Spain in a couple of weeks and like you I have to plan ahead because as you know you don't know how you are going to feel at the time, I always use to go with the flow to please everyone else but really can't do this anymore, I do things in my own time at my own pace I still do things only slower, you take care XXX

Hurtingmom profile image
Hurtingmom in reply to kimey007

I really need to follow through on that! Doing it at my pace! Have a great trip- I would like to see Spain again( more than 40 years since I've been!)

fenbadger profile image
fenbadger

I assume Lyft is something like our Dial a Ride. A compromise between cabs and buses? You're right to do what you can, and conserve your energy. But you DO need to fun things too. Only you can decide these things.

I still get about by bike, but slower and shorter distances, and less off road. I'll keep going while I can. Yesterday I did 25 miles with lots of breaks, and cut the trip short by 2 miles. It meant I was out an extra hour but it was ok. Might have been the better decision. Another 2 miles and I might have made the train I planned to, but I don't push my body as much anymore. It meant I spent 1 hour waiting for connections and 2½ hours sitting on a train which was actually helpful.

Wishing you power and wellness :)

Hurtingmom profile image
Hurtingmom in reply to fenbadger

Lyft is a car service by the public. Drivers sign up somehow and you find then by requesting a ride via a phone app. It is quick and cheaper than taxis. You pay via the app. Everyone has been so nice

fenbadger profile image
fenbadger in reply to Hurtingmom

That sounds excellent.

tulips123 profile image
tulips123

Wow. Very well done. It's good to work out a way of doing things like that when you've always got so much enjoyment from it. the realization of your new limits is a cause for sadness, a bit like a grieving process really I think. I've been housebound for nearly 3 years now, which is frustrating and sometimes makes me angry and upset but there has to be a sense of acceptance of the new order of my life. I have huge respect for the way you have found a way to do that. Very best wishes. Tulip xx

rosewine profile image
rosewine

Yes your post resonated with me as it is hard accepting what we have become. I had always worked very hard and so had my Oh and we had planned to retire, buy a small bungalow and motor caravan and that has all gone out of the window with us both being ill but there are compensations as I certainly have more time to smell the roses as they say.x

Katherineanne profile image
Katherineanne

I understand...its a loss to ourselves...that everything is different now.

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