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how do I cope?

(14 Posts)
charlmills Tue 01-Apr-14 10:32:11

My dh is currently undiagnosed but we are currently waiting on ct scan results. The rheumatologist is looking at Ankylosing Spondylitis!
Dh had been having pain, numbness/tingling in hands and feet, neck and shoulder pain on and off for a year now. He ended up in a&e a while ago and they did all sorts of tests which did not come up with anything.
The neurologist has still not completely ruled out ms either.
This is just Such a hard time. We have two young children and I am finding that I am doing increasingly more and more and holding it all together. I am knackered to be honest with it all and the worry.
I am now almost panicking and feeling trapped at the thought of dh getting worse and for the rest of our lives.
I feel like I sound really selfish but, at this stage, I cannot express How I really feel to dh.
He seems so withdrawn too and feel that he may be depressed too.
I just wanted to vent really and would love to hear if anyone has had similar experiences and How you cope with two little ones too.

canutesauntie Tue 01-Apr-14 10:43:04

I am sorry for what you are going through and sympathise with what must seem as an overwhelming burden all descending on you. My DH had a long drawn out illness and died when our boys were small. I found my way of coping was to accept there was nothing I could do to change the illness and to focus as much as possible on keeping things normal and positive for the boys. I tried really hard not to let their lives be subsumed by illness. You will find your way but it is tough, mentally physically, emotionally- go easy on yourself and good luck.

charlmills Tue 01-Apr-14 13:35:26

Oh I'm so sorry to hear that. God that must have been really tough for you.
Your right about keeping it positive for the kids as they are now automatically coming to me for EVERYTHING as dh is increasingly withdrawing and is grumpy with them as he is so fatigued.
I just feel so angry at whatever he has, him and myself for feeling like that IYSWIM.

Once he has a diagnosis and effective treatment, you can begin to take stock and make plans. You are doing fine so far, just take one step at a time and don"t try to look to far ahead because their are just too many unknowns for that be helpful at the moment.

When I was first diagnosed with Lupus, the first book I read said that I had a life expectancy if 5 years and would never have children. DH and I git as far ad planning to move to a bungalow as we believed I would lose most of my mobility (based on reading) I didn't know just how much treatment and knowledge had improved. 15 years later, I have 2 children and a pretty normal life.

Good luck to you all.

charlmills Tue 01-Apr-14 16:57:52

Thank you. You are so right and have definitely calmed me down a little. It's just all so daunting. We have gone from them testing for horrible progressive autoimmune disorders, brain tumors etc. to now something that is not a death sentence but a potentially life changing thing.
I'm just so up and down, it's been a hell of a year. The future is so uncertain.
I just feel I don't know How to communicate with dh at the moment as I don't want to put any extra stress or pressure on him. Aaaaaaahhhhhh!

Ruralbliss Tue 01-Apr-14 21:05:24

I could have written your post OP. My dh also is undiagnosed but due to have MRI scans on Friday. He has the same tingling, numbness as your DH but also crippled with acute facial pain & headaches. We now realise he has been on a steady decline for well over a year but was initially treated (antibiotics) for sinusitis. He has been in bed for a week now increasingly unable to tolerate noise or light. He runs his own software company which is our main income, we have three primary school aged kids & last year bought the house & land of our dreams having rented for ages while we searched for an 'affordable' (mortgaged) place to establish an urban eco small holding.
I can't help but imagine various scenarios ranging from 'oh look there's a bad tooth causing all this pain, lets whip it out for you' to terrible deadly tumours or degenerative diseases. I have a little weep on the way home from work but other than that am trying to keep it together as best I can.

I feel pretty lucky that I recently took a full time role for a large organisation after a long career break & working at home for my DH as now I have 40 hours of respite where I am busy thinking about my work and i also have an income (mainly spent on petrol and childcare but...).

We've paid for a private MRI scan on Fri but have no health insurance so will wait to see what they show up.

One thing I've found on Google which matches my DHs wierd symptoms exactly is 'spontaneous cerebral fluid leak' which is rare but fixable (GP had never heard of it, neurologist poo-poohed it) so I'm holding on to that as a possible until we have an actual diagnosis. Thinking of you & your uncertainty. Fingers crossed for some positive news soon. Keep us updated if you can. Thanks for posting.

TBH I was pretty grumpy about the whole diagnosis, I got a bit militant about not being defined or labelled by my illness. So on the one hand I could be very defensive and snappy, but I also wanted to talk about what was happening to me in boring and repetitive detail. My family had the patience of saints, and I think they probably had it tougher than I did in some ways. I settled down in the end, once my medication meant I was feeling better.
Maybe research some support groups, online or in RL, so you have info ready if/when needed?

charlmills Wed 02-Apr-14 10:53:58

Thanks ruralbliss, and I really Hope you get a diagnosis soon. I think that is one of the hardest things at the moment - being in limbo land. And all these sorts of symptoms match so Many conditions. It does your head in.
Thanks also mrscakes I will try and do that too.

charlmills Thu 03-Apr-14 19:04:40

Oh God. Dh has had to take himself to hospital. He has been in loads of pain since Saturday and on off pins and needles and paralysis.
Last night he lay on the bed and couldn't move. He has been on and off all day and Can't get hold of neither the neurologist or rheumamatologist and gp could be no help.
So he felt the best thing was to get to hospital as we still have no answers....
I'm here with kids not knowing What to think...!

Oh no, sounds scary for you both.
I hope he feels better and gets some answers soon.
All the best.

Ruralbliss Thu 03-Apr-14 22:16:59

Oh my goodness that is a shocking turn of events. Have you had any news? Did he drive himself to hospital and is it far away? What are you telling the children? We're telling the kids 'Daddy is poorly' and that's about all they need to know.

Thinking of you and how worried you must be. Keep us posted if you can.

Ruralbliss Tue 15-Apr-14 21:35:16

Hi Chalmills. How is your DH doing? I've been thinking of you.

charlmills Wed 16-Apr-14 19:42:06

Hi. Well we have had the most horrendous two weeks.
They sent my dh Home from a and e saying there was nothing they could do. He then got a whole lot worse and started having these seizure/episodes of some sort. He was concious but was totally out of it and was not sure where he was etc. With the paralysis too.
We spent the next two days desperately trying to see someone. The gp was rubbish and his neurologist was on holiday.
So the weekend came and went of us just going through it alone.
finally on the Monday the neurologist got back to us and he admitted to hospital straight away. What a relief.
in the meantime and in hospital his balance got worse and numbness, tingling and episodes were still bad.
They 'observed him and did a few blood tests. After three days his consultant finally turns up and says they cannot find anything wrong with him and nothing to justify doing any further tests. And to basically go Home to rest and change his lifestyle!!! They have also fully discharged him from neurology and told to go back to gp!
It's crazy. We have seen a good gp since but are still in limbo land. We are no more and more convinced it is MS and that the drs think time will tell.
so it's been a crazy time and very emotional.
Thanks for asking about me. Did you get any results from your dh MRI scan ruralbliss? How are you and your kids coping?

HKat Mon 12-May-14 20:19:54

Hi - I hope you're DH is doing better, this must be a very stressful time for all of you. In only dropping in to say, if it helps, that I was diagnosed with ank spon about five years ago, after suffering from undisguised 'reactive arthritic' type pain for years. It was a big shock, not least as I was only early 30's, and it's rare in females. Anyway - I just wanted to say that there IS help out there for ank spon, particularly with the biological medicines they can diagnose these days. They're called Anti-TNF and I inject myself twice a month. I very quickly went from such severe pain I too was in and out of A&E, to playing netball twice a week. Ank spon is still hard to live with and the drugs can tire you out (as they lower the immune system). But the meds can really help. Best of luck.

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