mndsucks

#mnd wife, carer, full time worker needing somewhere to scream

[mndsucks @mndsucks]

@widow_waiting @JB6018 I managed to opt out of emails from one supermarket but nothing else and it's a bombardment 😥 hope you are all well and surviving xx

[mndsucks @mndsucks]

@JollesMary A beautiful photo. So sorry for your loss x

[mndsucks @mndsucks]

@RaitAndrew @JohnLewisRetail Thanks for this, was going to order a dishwasher today from @JohnLewisRetail and pay for removal and installation but won't bother now. Have a terminally ill husband, I don't need any extra hassle. Thanks for the recommendation of @ao @littlefairy60!

[mndsucks @mndsucks]

@widow_waiting Well done, and happy birthday, even if it doesn't feel particularly happy. Sending hugs xx

[mndsucks @mndsucks]

@sarahkarpar Hubby has continued to work using eye gaze as much as he can, he's an engineer. Work have provided equipment through grants available. It has helped him feel he has purpose and luckily work have supported with as much or as little as he can manage

[mndsucks @mndsucks]

Read something shit this week - 50% change of offspring of #als sufferers will also develop the disease. Bad enough it's my other half, but will it break me off either of the kids were to develop it? It's never going to be over 😓

[mndsucks @mndsucks]

Today is the first day in 2 years where I'm not sure I can keep working full time 🙄 but being at home is worse - I'm working to escape the reality of this shit #fuckals

[mndsucks @mndsucks]

@James65400534 So sorry - sending you all love and strength and hugs 😟😘

[mndsucks @mndsucks]

@LibbyMbc That sucks. My ALS hubby has a laptop called Larry, a tablet called Terry and another eye gaze tablet called Fred. So I totally get the naming!

[mndsucks @mndsucks]

Feel sad today. Realised I've been ignoring the emotional and couple needs of both of us as it's all too big. We're glossing over life to cover the cracks. Don't want to have any regrets. I need a cuddle from my man more than anything, but can't have one. 😥

[mndsucks @mndsucks]

@jonstew1982 They do, I can see it in my husband's eyes more than I could before he got sick. Hate MND/als with every fibre of my being but I am lucky to have the love of an amazing man (and he's lucky to have me 😂). Stay strong xx

[mndsucks @mndsucks]

@SethPoling10 Same in our house. Hub has MND/als and can now only communicate using his eyes and computer. Both kids (14 & 11) pick and choose when to listen. They love him but as kids it is much easier to ignore a computer than doesn't include body language as well 😢

[mndsucks @mndsucks]

It hit me like a brick yesterday - what of its not over when it's over for hubby? Chances are it's genetic - kids could be living with a ticking time bomb #endals #mndmoreneedsdoing

[mndsucks @mndsucks]

It's either sit and enjoy his company or do all the million jobs. Can't do both 🫤

[mndsucks @mndsucks]

Keep seeing all these posts on FB about how proud my friends are of their children. Well I'm mega proud of my 14 and 11 yr olds for dealing with things no adult should have to deal with to help their dad, whilst also managing school successfully. Can't really put that on FB 🫤

[mndsucks @mndsucks]

Had a convo with MIL tonight about not managing the workload in the house - inlaws stopped 'helping' when the carers increased hours. But carers don't do the rest that needs doing - laundry etc. Not sure she registered 'I'm exhausted, and I'm going to break soon' message🙄

[mndsucks @mndsucks]

Need somewhere private to vent about the horrors of #mnd #als. Hate this disease with every fibre of my being