@jade770

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jade770

I'm on the struggle bus

Sorry in advance ... I just need to vent a little and I thought this would be the right place. It's nice to have a group of people that know what you're going through. I'm seriously on the struggle bus. I've been deemed "high risk" for covid so I've been exiled from my home and banished to my nanna's house (a little exaggeration) as my mum is a key worker and could bring the virus home pretty easily. I've been away from my family for over 14 weeks. My nieces live with us and they're like my kids (complex story) , I normally spend every single day with them and being apart from them is really difficult. My mum is my rock and I can't even hug her. To top it all off my ms symptoms are going haywire with the heat and the stress, I'm having new issues with my vision and intense nerve pain near and around my eyes which isn't great. My ms nurse told me she would talk to my consultant but guess what I've had radio silence ever since. Thankyou for reading if you got this far and I'm sorry for unloading on every one.

Vixen

@Vixen

Hello @jade770, 'the struggle bus' is a great expression and nicely sums things up. I had a phone consultation with my consultant, she told me that all of her caseload of patients has experienced a worsening of symptoms and increase in anxiety, so I would give your MS nurse a call again. The isolation effect is really tough to deal with, as if life's not tough enough with our diagnosis as it is. Don't feel bad for unloading, you're only saying what many of us are feeling. I hope you are managing to stay in touch with your family via technology; stick with it and look after yourself. If it's any consolation, at least it's gonna be a sunny day and we're not in the middle of vicious winter.....x

peterpanssister

@peterpanssister

You might want to consider having those new symptoms assessed lovely. If this is a relapse with optic neuritis you might want to consider a course of steroids. I know it's probably the last thing you want to think about right now and goodness knows, I hope it's not, but I know the pain you're describing and it can be truly horrendous. Anyway, there's no reason you can't make contact with your consultant yourself. Email them, copying your MS nurse into the email. You can call their secretary for the addresses if you don't have them. No-ones gonna die if you send an email and you may get some such needed contact from them. Worst way, how about going via your GP is you've found them any good in the past? Go back to your MS nurse too, it's the squeaky wheel that gets oiled you know? Just wanted to say you're not alone anyway. You must be missing your home and family so much. I hope you get to be safely with them again really soon. Hang in there. xx

ColettePage

@ColettePage

@jade770 you unload as much as you want! Coronavirus has a lot more than 40,000+ deaths to answer for! Iโ€™m not on medication so not needing to shield although I voluntarily am to some degree. Are you able to Skype or zoom meetings with your family & loved ones? Col

jade770

@jade770

@peterpanssister , thankyou for your message , I was planning on calling my nurse again on Monday but I'm thinking now that I should email them like you suggested , I'll have to call my neuros secretary and see if they'll give me the addresses. My GP is even worse tbh , the last one I saw was adamant that I was lying when I said I've had ms symptoms since I was 11 and was diagnosed at 19 , that was a fun appointment . His face was rather funny when he finally read my notes though ๐Ÿ˜‚ I don't have much luck with medical professionals Luckily my mum is very trigger happy when it comes to video calling so Im lucky enough to see her and the girls everyday which is amazing ๐Ÿ’• I appreciate your reply and your advice it's very helpful and kind ๐Ÿงก๐Ÿงก

jade770

@jade770

@colettepage it definitely has! There's going to be one hell of a spike with mental health related deaths. I'm pretty lucky I video call with my sister and my nephew's often and my mum and my nieces almost daily , I know it's to keep everyone as safe as possible and I can keep an eye on my nan too which has put my anxiety around her at ease a bit. Its nice to spend time with nanna not going to lie xx

ColettePage

@ColettePage

Thatโ€™s lovely! @jade770 I believe we all have to take positives from every situation. As you say youโ€™re having quality time with your nan, mine is cos Iโ€™m not on any meds at the moment Iโ€™m still able to have my granddaughter live with us (been here since born 14 months ago) Iโ€™d be so upset if had to shield now! Col ๐Ÿคช

Stumbler

@Stumbler

@jade770 , who has deemed you high risk of Covid-19? If this was due to Tysabri being your DMT, then this risk has been changing since the start of the pandemic. Check out the latest information here :- https://www.mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis You need to try and jump off this "struggle bus" at the next stop. This whole Covid-19 situation has probably caused the exacerbation in your symptoms. So you may want to reconsider your Covid-19 risk, your domestic arrangements and try to regain some normality to settle things down.

jade770

@jade770

@colettepage I bet having your baby granddaughter at home has been amazing , the amount of quality time you get to spend with her is awesome. Xx

jade770

@jade770

@stumbler hi again ๐Ÿ‘‹, my ms nurse told me that I was high risk due to being on tysabri and having some ongoing respiratory issues , they picked up a shadow on my lung at my last MRI so they're being over cautious. My mum is also a key worker so there's the added risk of that too so I've been advised to stay at my nans for as much as I can . Plus she's high risk so I've become her carer of sorts too. I'm trying my best to get off of the struggle bus , my mind/mood is slightly better today. I've managed to spend a bit of me time in the garden ๐Ÿ˜Š

Stumbler

@Stumbler

@jade770 , ah, if there's a respiratory issue as well, I understand the caution. My wife's a key worker too (NHS Nurse). Perhaps I should come and stay with you and your Nan too? ๐Ÿ˜‰

jade770

@jade770

@stumbler anytime ๐Ÿ˜‰ as long as you don't mind sleeping in a hammock in the conservatory , it's nice and warm this time of year ๐Ÿ˜‚ My mum runs a care home so the people she looks after are vulnerable too so there's a lot of caution around them too.

Stumbler

@Stumbler

Maybe next pandemic, @jade770 . ๐Ÿคฃ๐Ÿ˜‚๐Ÿคฃ

jade770

@jade770

@stumbler just bring some pasta or loo roll ๐Ÿ˜‚ and you'd be more than welcome

Stumbler

@Stumbler

@jade770 , you drive a hard bargain............

jade770

@jade770

@stumbler sorry got to pay the rent some how ๐Ÿ˜‰

Stumbler

@Stumbler

@jade770 , and I thought you were just after (what's left of) my body! ๐Ÿคฃ ๐Ÿฅด

jade770

@jade770

@stumbler that too ๐Ÿ˜‰๐Ÿ˜‚

Stumbler

@Stumbler

@jade770 , I'm just packing my toothbrush. See you soon....๐Ÿ ๐Ÿคฃ๐Ÿ˜‚

jade770

@jade770

@stumbler I'll be waiting with Dettol spray and hand sanitiser ๐Ÿ˜‚๐Ÿ˜‚

Stumbler

@Stumbler

@jade770 , Oooooooo, I love it when you talk dirty! ๐Ÿ˜

Vixen

@Vixen

Behave @stumbler, you're supposed to be the pillar of the Shift community! :-)

Stumbler

@Stumbler

You're right, @vixen. Perhaps we should get a room, @jade770 . It must have a hammock though. I've always fancied myself as a bit of a swinger! ๐ŸŒ๏ธโ€โ™€๏ธ(nearest I could get to a swinger!)

jade770

@jade770

๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ thankyou for the chuckle , you made me belly laugh @stumbler @vixen

Stumbler

@Stumbler

It's been a pleasure, @jade770. You needed to de-stress and laughter is a great way to do it. ๐Ÿ˜‰

JayJay10

@JayJay10

@jade770 First of all, never apologise for expressing how you feel. You go through a lot and have every right to say what you want and when you want. I find it quite nice that you are with your nieces, I too use to spend a lot of time with my nieces and nephews, but as Covid-19 has struck, it has made it practically impossible given the living arrangements that are in place. The only way I get to see my family is by them coming round to my house and sit in the garden, being at a distance. I currently live with my mum and dad and my brother... Oh, and my walking stick! ๐Ÿ˜‚ I hope that your MS symptoms start to subside and fade away as times are already hard enough given the current climate we are in. I love the term that you used "The Struggle Bus", it is absolutely perfect as we all have moments of complete torture with this diagnosis. If only we could all aboard The Struggle Bus and open up to each other giving us the support and comfort knowing that we are not fighting this battle alone. I wish you well and that you and everyone around you stays well and safe. All the best! Jay x

Lilypalooza

@Lilypalooza

@jade770 'the struggle bus' is now officially my favourite phrase to date ๐Ÿ˜‚๐Ÿ’œ ...also thank you to you and @stumbler for the hilarious banter. I haven't been on for a few days and reading that made me chuckle out loud! Hope you're taking care of yourself, it's tough not being able to be close to your mum and nieces at this time, thank goodness for Zoom! x

Stumbler

@Stumbler

There you go @jade770 , we're helping others too - spreading the love and laughter.

jade770

@jade770

@jayjay10 thankyou , your message was really nice . It would definitely be handy if the struggle bus was a literal bus , I'd be a frequent passenger ๐Ÿ˜‚ especially over the last 6months.

jade770

@jade770

@lilypalooza, @stumbler and I are here for your entertainment needs whenever you need it ๐Ÿ˜‰

Stumbler

@Stumbler

So, we're a double act now , @jade770 ? I'm not sure I could manage a live performance................. ๐Ÿ˜ฎ

JayJay10

@JayJay10

@jade770 Haha, I think I would be a frequent passenger too. I have been on absolute invalid of late. The past 3-4 months has been a living hell, my mobility has been extremely limited, half of me thinks that Iv'e already had Covid-19, and a long time ago too. Back to the bus ๐Ÿ˜‚ ... I am definitely sitting at the front, unless you want vomit throughout. All the best! ๐Ÿ˜œ

jade770

@jade770

@stumbler I don't think I could manage them either , we could record a couple of performances on a good day ๐Ÿ˜‚

jade770

@jade770

@jayjay10 I think the struggle bus needs to be a tour bus type thing. I need somewhere to nap ๐Ÿ˜‚ my fatigue has been of the charts and we're going to need plug socks for heat pads and tens units. I'm sorry to hear that you've had a rough few months , fingers crossed things start settling down soon xx

Stumbler

@Stumbler

@jade770 , two performances in a day! I'd better start upping the vitamin pills! ๐Ÿคฃ๐Ÿ˜‚๐Ÿคฃ

JayJay10

@JayJay10

@jade770 That comment made me smile so much as I completely agree with you. I would most definitely tour it everyday, you would have to wake me up if I were to sleep as Iโ€™ve always been a loud snorer. ๐Ÿ˜‚ (I think they are lies) I hope your fatigue starts to settle down soon and you come back to a bit of normality. Thank you for your kind wishes. Xx