Need to vent to people who will get it.

[Diagnosis_Collector]

As the title says. I'm struggling right now and just wanna cry, but can't because I'm on holiday and it's my birthday and I should be having a wonderful time.

I had to get a taxi and come back to my hotel around 5pm and haven't moved from the bed since. I feel exhausted. It was only a 20min walk from the town but I couldn't do it. I feel so lazy for getting the taxi and feel crap that I've spent my birthday evening basically in bed. The hotel gave me a bottle of wine for my birthday but I have no interest in enjoying it, haven't even felt the energy to walk next door to get food. I didn't think I'd over done the last few days, early night last night as my flight was super early yesterday. I do a lot of sitting and people watching/reading a book in cafés. My morning was spent on a train journey where I just sat and listened to music. Other than a little bit of shopping and 10 mins in a museum I haven't done a lot today at all.

I always go away for my birthday, it's just a fact of my life. My lupus/health has been declining over the last 6-8 months and I don't think I've really appreciated how much impact it is having. Added to that, this is my first time abroad in over 18 months and I'm also on my own. I want to maintain my independence but there is just so much I could do with support with. Things like decision making when I'm tired, helping me open bottles with my achy hands, lifting my bag etc. I refuse to loose my independence. The day I described above seems nothing to me significant to me and actually feels quite boring, but my body is saying otherwise. I feel like I've been awake all night after running a marathon.

Can someone give me a little pep talk and get me back into vacation mood?! The expectation to be having a good time coupled with the reality that my body is declining is knocking me down right now xx

[BukkyApampa]

I’m sorry to hear this, comparing life before and after lupus makes it so hard to adjust expectations, please be kind to yourself, you are a warrior and lupus has nothing on you! This is just a blip, you will get back up again, please have compassion for yourself, this is hard hard! Can you go to a lovely spa where you are? Like you I love to celebrate my birthdays by going out, having a nice meal and sometimes go dancing but when my body says no, then I opt for a more relaxing celebration like a nice no pressure massage, facial, sauna, jacuzzi and relaxing swim, I find these activities helps me celebrate me. Happy birthday 🎊🎉🥳🤗💜

[weathervane]

I think we have all been there , we know about pacing ourselves but if you are enjoying yourself and having a wander in and out of shops , you do more than you realise and exhaustion suddenly hits you . Don’t beat yourself up , have a good rest and enjoy today, take more rests and don’t push yourself. If you have to take a taxi then do it , you are on a break.

Im going away at the weekend and I do worry about the travel as it is hard work, I will try and pace myself as well.

Hope you feel better this morning and enjoy the rest of your stay, gentle hugs 🤗

[glasgow-girl]

I think you should congratulate yourself on going shopping and to the museum. Your health has declined but you still went abroad, exposing yourself to new things. Sitting and people watching can be relaxing and you are still making the effort. It is hard when you adjust to new restrictions and a new normal but try and recognise you are pushing yourself and you deserve to rest to enjoy the rest of your holiday.

Sending Hugs

[Graystar]

Aw bless you, travel can cause me to flare and maybe after you’ve had a good rest you’ll be feeling in holiday and birthday mode. Try not to be down on yourself, you’re not being lazy, it’s lupus doing its thing and whilst nobody wants lupus to rule, sometimes we’ve got to be kind to ourselves or lupus will keep on trying to seize the day and the next day. Maybe plan on some birthday celebrations when you’re feeling better, after all the best birthdays are always the ones that carry on for a week or so 🥰

I can relate to your independence, it’s hard when things change but someone once told me using a walking stick or any aids to help us maintain our independence is vital. I now have to use a wheelchair on long walks and it really makes me miserable but I’d be more miserable trying and failing to do the day out or worse still missing out altogether. Be kind to you first and foremost 🤗

[Oshgosh]

xx

[honeybug]

Hello love…first thing I’m sending you a very gentle long teddy bear hug. Hope you can feel it. I’m so broken hearted 💔 for you atm for such a let down after such great expectations for a great time away from it all. Next….

H A P P Y B I R T H D A Y SWEETIE🌿🌹

🎂♥️🤗🎂🥰🎂🌿🌹🎂🤗🎂♥️🎂🥰

🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹

You are beating up on yourself because of this holiday not being as expected. I think you should remember that your condition is one that progresses. It continues to chip away at your body and your ability to do all that’s been done before. It’s been a while since this holiday has taken place…18 months ?…that’s quite a bit of time for your condition to change things.

🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️

I’ve always been fiercely independent myself until I couldn’t be. My body just won’t let me do all that I was so used to doing alone and well. Lupus runs rampant in my family so genetics has a heavy hand in things our bodies inherit. Through no fault of our own those of us are recipients of genes that are passed on without parent/child input. Having said this we must learn to cope as best we can with what we’re given. First big hurdle is to admit then accept our reality. This isn’t easy I know firsthand. I pushed through everything as long as I could until I couldn’t.

🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️

You’re NOT lazy or crazy or any other negative connotation. You’re simply afflicted beyond your control. You now must learn how to pace yourself. It doesn’t matter what anyone else thinks or says about you. You know your truth that’s all that matters. I am in your cheering 📣 section all the time. Unbeknownst to you I’ve been praying for you everyday. I will continue to pray for you and all living beings. I love you and care about you and your well being sweetie.

🥰♥️🥰♥️🥰♥️🥰♥️🥰♥️🥰♥️🥰♥️

You are now my friend and I’m so blessed to finally have met you. We can chat whenever due to this marvelous technology we have. I’m in the USA. I’m almost totally disabled now. I do have a wonderful beloved hubby who takes care of me ( except now he is recovering from cancer surgery and I’m caring for him). It was very hard to give up my independence but I had no choice. You can learn to accept help with baby steps. Small things will help you to get to a much willing state of mind that it’s okay to take help when needed. You are NOT a weakling or defeated accepting help. You’ve already taken a pretty big step by asking for kind supportive words atm. I sure hope I’ve been of some help in giving you a strong emotional shoulder to lean into. You are precious to me and again I love you sweetie.

🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹🌿🌹

Happy Birthday to you. Happy Birthday to you. Happy Birthday dear friend. Happy Birthday to you. 🎂🎊🛍️🎀🎁🎈

Honeybug aka EvaJo aka EJ 🥰

[lupime]

Hi DC and Happy Birthday,

Good old Lupus- it always likes to pop up and remind us its there, no matter how careful we try to be. It doesn't care about our feelings does it? Please try not to be so sad and give yourself some credit for all that you have done so far. I think you are amazing, I really do. I could not do what you have done. I think you are so brave and am hoping that after having a couple of easier days you will feel a bit better about what you have achieved. Think of the taxi as part of the holiday treat package rather than a negative. Give yourself permission to adjust to a different holiday you, maybe this will allow you to enjoy what you can do over the next few days rather than fretting about what you can't. xx

[Poshcards]

Can I just send you gentle birthday hugs xxx

[IsleofWight1]

Just wishing you a belated happy birthday.

If you are feeling better maybe you can do all your birthday things today instead. Or tomorrow if it’s necessary.. Your independence is not lost, we have to learn to be more flexible and sometimes change our expectations.

Be kind and forgiving to yourself, it’s not your fault🙂

[MrsMarigold]

Hi DC. Happy Birthday and congratulations for going away by yourself. Lupus is not a good travel companion. I travel later this month for a week and am already planning my survival (lol). Important: as things change, we just plan ahead differently. Take the word decline out of your vocabulary. It sounds like you need rest. Deep sleep. This needs to be part of the plan. If I do not take a nap every afternoon fatigue catches me and I’m down for days. Also when I travel, my plan includes Valium at a low dose. Doctor approved for muscle pain and the anxiety of travel. It truly helps. Last spring I went to the beach with just my dog, Teddy. I’ve been doing this for 30 years. My plans have had to change. Not decline! My walks are short. I get the free shuttle. I sit inside with a beachy drink instead of outside. The beachy drink is enjoyed with just a few long sips. I sit at the bar and talk to people. I read in the shade. I take a long nap. I rent a small house so I eat a peanut butter sandwich and walk Teddy. Maybe take shuttle to beach and watch the sky. I rent a bike and go one mile. Years ago I met my husband we used to bike 150 miles a week.

Telling you this because I do get what you are saying. Have a good cry. Deep sleep. You are okay. And not declining. Changing. I hope you check in here and let us know you are ok. Mrs Marigolds

[Oshgosh]

be kind to yourself xx