I just feel every day my struggle to get out and do something or anything is just not there. 3 days of getting out & being active has left me with nothing! Don’t have the strength to get out of bed, pain, bowel & bladder issues taking over my life! Waiting for appointments is draining too. 9 months wait so far to see urology, now waiting to see cardiology due to erratic heart rates. Just feel like I’m getting nowhere & it’s pulling me down. Anxiety & depression are not good which of course makes the symptoms worse! Just really feel I need a rant with people who get me rather than those who say, oh don’t you look fantastic and you look so well! Don’t get me wrong it’s nice to get compliments but not when you’re fighting every single inner demon to put the smile there. Do have appt with GP tomorrow to talk through all this but thank you for letting me rant on here!
Struggling :( : I just feel every day... - Multiple System A...
Struggling :(
welcome any time you need a rant - or two. as you say we understand
feel free to rant, so hard and frustrating for you , hope the doctor can help ❤️
Hi,Sorry to hear your woes, which we all feel at some point.
This is what the forum is for , shout, rant, rave, moan or just generally get it off your chest.
We are all hera to listen and support each other as we are not alone.
Tell your GP how you feel also.
Good luck.
Rest up.
Paul &Sue
It's not ranting - it's just being honest about how you feel. Sending hugs and hoping the GP can speed up appointments for you. Take care and rest up.
HiI'm glad you can. I've decided to laugh about things or I'd kill instead. Like being told to @@@@ing stop messing about and get a move on 🤣 along with pick your feet up😂. Nobody really understands except us. I hope the drs helped? Sending love 😘😘😘
H
X
Hello, yeah I was told at one point that MSA can affect motivation - partly because of all the fatigue etc, and also brain signals not firing as well. So at least you don't have to blame yourself, if you can't manage something. Our solution was to have a bossy carer who Dad also really liked 😅 She knew his needs really well, so it took pressure off him having to motivate himself. It was easier for him the other way round - to have stuff organised for him, but be able to just say no, if he really wasnt up for it.
The things we have to do to manage "the beast" eh . 💗💗
Like everyone has said, you rant and get it off your chest. You are doing the right things. Your GP will advise and help with the practical things. Your parkinson team will help you with services you need. It's easy to say positive things to you. Try and do things when you can. It's a balance with activities. I remember Katie Rigg saying to my husband an MSA body recovers very differently to strenuous activities. Enjoy everything you can do and rest regularly. Love and best wishes. Xx
Rant away. We don't mind. 😊. It really feels like pulling teeth sometimes getting seen by a health professional when it's needed. Spoke to my husbands GP the other day (after threatening to report the practice for being useless. It's amazing what that does). They recommended we put in a complaint to PALS at the hospital about outstanding issues. We are going to do that but it's exhausting. I'm kot even the one with MSA, my husband is, so I can't imagine how it must be for him.
We do understand only too well. The feelings you describe are very familiar to me and I expect to every MSA sufferer. It’s good for us to share them and recognise that anyone who walked (or shuffled or wheeled!) in our shoes would struggle. Maintaining relentless positivity and one’s game face for the world comes at a huge cost.
Also the overwhelming tiredness and despair are recognised MSA symptoms just like all the rest of the momentously unfair list. It’s tempting to play boom or bust with your energy and do too much on good days, leaving nothing in reserve. I too am guilty of that, but am slowly and painfully learning that it doesn’t pay off. Rest and be as kind to yourself as you would be to a fellow MSA sufferer. We are on the journey with you and send support.
Thank you everyone, saw my GP today who was fantastic and gave me 45 minutes of her time. Chasing the appts for me, blood tests and upped tablets but she does think that a lot of what I mentioned it is MSA driven. The reality that a wrong diagnosis of ‘possible’ MSA is on the cards is definitely decreasing as months go by! Thank you everyone for your support helped me get through a hard day. Xx
I feel for you. I’m on the same situation with a’possible’ diagnosis. I don’t currently have autonomic features ( past sci problems that have rectified. But I’ve had a repeat mri and that won’t lie but awaiting results is awful. From all the reading I’ve done I realise my dream of an altered diagnosis is unlikely to change as they’ll say autonomic features will come… anyway, all that to say I understand, I’m here, just rant away…
Needing opinions or facts with MSA-C
Not sure if I am eligible join your elite group
Mum newly diagnosed with MSA-P and we are all struggling
