Good news!

[dwsurquhart]

I just had a CT of my head and they found my brain!!!😁

Now that the fun is it of the way, the neurologist has found a growth or fluid build up in the air cells of the brain which are located behind my sinus cavity near the brain stem. I am told this is what is causing my facial ticks and hemifacial spasms.

They are currently unsure if they are caused by the biologics or not, or from the poisoning from my first rheumatologist.

So my saga continues. I have extreme pain and lack of mobility in my legs, if I squat down I cannot get up without assistance and severe pain in my mcl and main joints in both knees. My fatigue levels have increased again and I have trouble staying awake and frequently nap during the day. Which brings me to the fact I cannot sleep at night. I try to stay awake all day but just can't. I drink coffee with no affect.

No on top of it, my wife complains about the state of the house. I make all the meals, get them ready for work and school, do dishes and get a little baking done once a week.

All to hear "what the he'll have you done all day? I am at work all day" "I could not do shopping as I am at work all day" and all said with a certain disdain. Makes me feel even more useless than I already feel.

Sorry for this little rant, just feeling rather shitty tonight and feel I am no longer a part of my family, or a partner to my wife, but a servant in my own house.

Feeling down and crappy

Scott

[helixhelix]

Good that they’ve found a reason for some symptoms. Did they discuss what could be done? Or is that the next step?

Partners can be so good at pressing each other’s buttons! Presumably you've had many a conversation about the physical limitations of the disease, but have you told her how you feel emotionally? And asked her how she feels? She could be snapping at you because she feels guilty at not doing more herself.

Do you get PIP? if not might it be worth applying and using any money you get on extra help in the house?

[Hidden]

They found a brain Wow!! 🤣😂😂

Seriously this bloody disease takes no prisoners . We suffer daily often changing and disabling symptoms but effects the family’s as well. Yes I feel useless and guilty where my family is concerned and it gets me down but they are victims too and they also suffer( feeling down and restricted and often depressed).

As mentioned PIp. Bloody messy job but preserve we are entitled. If I get mine I’m going to get a cleaner my once sparkling house is now dirty and messy 🥺🥺😞 hate it .... Shopping??? Could you order online?

You’ve had some relatively good news 🤞this is an upwards trend.

[sylvi]

Oh Scott I can so empathise with you. My hubby has retired and he does everything for me and yes I feel so guilty as I just can't do much to help him without suffering all the time. As Helixhelix has said sit down with your wife and have a chat about how you can both go on with you being ill, work out what work is important and what can be done together. Take her to hospital appointments so she can understand how it is making you feel. I do think taking partner/spouse with you to appointments is vital. xxx

[Hidden]

Dear Scott,

I'm sorry to read about this. It sounds as if you're both at the end of your tether. Is there a third party (friend, GP) you could talk things over with together? Somehow, something has to be worked out between you and your wife because things are not good for either of you at the moment. Are the children old enough to take on small tasks that would improve the state of the house so that perhaps your wife will be less stressed by it?

What happens at weekends? Does your wife see how tired you are? Do you ever get a chance to go out of the house to something you enjoy? Is your wife missing going out with you occasionally? Your situation sounds very depressing and is probably making you feel worse physically too. Somehow you need to find a way of relieving the depression. Can the hospital give any help with that?

I hope you find some positive help soon. If you can get just one thing better, you may find the others get easier to deal with.

Best wishes.

[Hidden]

Ah bless Scott I think we all have these moments of rants and usually the old saying 'you take it out on the Ones you love the most' comes to mind. Sometimes I rant sometimes hubby rants and we know its frustration on both sides. He is better now he comes to appointments and also we talked re everything, going out, sex and work and money and it did clear the air a lot. Sometimes it tough to say it but it would be harder if things are left unsaid. Its not about arguing its just over a glass of wine or a cuppa.

We do all shopping online and delivered and doing this saved so much effort too.

[dwsurquhart]

Thank you all for these responses. They've helped me put things into perspective. I really do appreciate this group, you are all a bunch of wonderful people.

Thank you all

Scott