Just need to off-load

[Scampi]

Evening everybody

I'm only posting this as I need to 'off-load' - I'm not expecting replies.

Pretty obviously, as I'm on this forum, I have PA - I've only been diagnosed for just over a month, and I have all sorts of random aches and niggles.  It's getting me down, but probably only because of the other things happening in my life ...

In May, my Dad was diagnosed with oesophageal cancer.  They hoped to be able to treat it via gastroscopy, but scans have shown it's too deep-seated for that, so Dad has to have 3 months of chemo, then major surgery to remove the bottom of his oesophagus and top of his stomach.  But they can't start the chemo as they've found some problems with his heart that have to be sorted out first.  I just can't get the thought of that cancer growing unchecked out of my head - until May I had an invincible Dad ... I now feel I could be losing him.

Then there's my Mum - she's been recently diagnosed with Parkinsons.  It's badly affecting her mobility and also wrecking her short-term memory.  So on top of dealing with his own difficulties, Dad has to keep an eye on Mum too.  And she's started falling often - 2 falls in the last week - the first one resulted in the black eye, the second one landed her in hospital for 10 hours having scans, etc, as she knocked herself out.  My Mum isn't the Mum I've known for 42 years now,and it's so hard to see her losing her independence and zest for life.

I work full time, and live at the opposite side of the city to my Mum and Dad, so I can't get over there as often as I wish.  I'm going to get them a monitored emergency phone (not told them yet, but hopefully, as Mum was a sheltered housing warden for over 20 years, they will accept it), so I will have some peace-of-mind that, if Mum falls when Dad is not at home, she can summon help.

But the problems with my Mum and Dad, plus my PA, are getting to me.  I just don't know what to do anymore.  My rheumy wants me to take mtx, but I don't want to take something that could knock me for 6 right at the time when Mum and Dad need me to be able to help them.  I just feel like my world is falling apart and there is nothing I can do to stop it - it's all too much at the moment and I'm getting more and more emotionally exhausted. 

Like I said, I'm not expecting replies - I just needed to off-load everything somewhere where no-one knows me or my parents.

Thank you for taking the time to 'listen' x

[leamarieuk]

I am so sorry to hear you are going through so much hun

Please just remember one thing ..yes people do have bad experiences on MTX, but there are so many as well to whom it is a wonder drug! You need to weigh up the pro's and con's very carefully here.

Yes it could make you feel sick to start with, but even when I felt sick I was still able to get on with every day tasks (I'm a single parent with 3 kids so you can imagine how many daily jobs there are lol) so there is no saying it would even slow you down, let alone stop you

Now I have no side effects on MTX (15mg), and have noticed a huge difference, especially in the increase in my energy levels.

Please don't just disregard the meds, it might actually give you the boost in energy that you need to help you deal with all you have going on.

hugs to you

Lisa x

[purple phish]

couldn't read and run scampi - you are having such a tough time . My mum recently had a stroke and that was really tough and now I need to (and want to) be with them quite a bit more at the mo and I am busy pretending I feel fine when I feel lousy.
So I understand a bit. Over did it yesterday with them and now my skin is burning hard and I know i am over tired.

I agree that metho might actually be of help - some people do really well on it.

We really need to find a way to look after ourselves to be any use in the long run. Why not post a thread on metho on the PA board to see what experiences others have had. That migh help you decide.

[flower fairy]

Troubles never seem to come alone but you certainly have got more than your fair share at the moment. I have an uncle who developed parkinsons at a young age and recently started taking falls like you describe and it is distressing to watch something you really have no control over take its toll on loved ones. If she is newly diagnosed she may improve when they get her tratment right. Your dads case is just so unfortunate that they cant begin right away with treatment. Do you have siblings that can help out at times aswell. As for the monitored phone you speak about my mum has the equivelent of them here in ireland the type where she wears an emergency call button on a neck chain at all times so if she was unable to get to the phone help is on the way once she presses that button, would definatly recommend it. I just began MTX recently and have found it's side effects severe but most people dont and even though I am still only on 10mg I think it is making a difference to the arthritis at least. Hope it makes you feel a bit better to have got it off your chest and hopefully things will improve for your parents Flowerfairy.

[Darren.]

hiya

i know where your coming from  its a tough one espicially when the family needs our help too,  i am in a similar boat

its good to offload it save bottling it up

as far as mtx goes alot of people do have good helping results without impacting the lifestyle

when the aches and pains etc niggle away its natural as i have found that it does wear you down, us down.

but not forever 

[jax234]

Scampi, my heart goes out to you and i really hope things improve for your mum and dad.Methotrexate does have side effects but thats not to say your going to get them.I opted for the weekly injection which for some reason really minimises the sickness.Unfortunatly it stopped workin for me but while it did i got lots of relief and minimal side effects.Do lots of research,it can be scarey when you see all these possible side effects but honestly it might be worth trying.I started on Humira recently but have to start Methotrexate soon too.Good luck Scampi loads of hugs and love jax xx

[arizona]

Hi
I started mtx a month ago, with taking the folic acid have had no sickness or tummy upset and definately no tiredness, feel loads better on it. Give it a try 

[moanalot]

Hi, Sorry to hear that you are struggling to cope. I know how attached we become to our parents and sometimes their ill health can affect our own health. Perhaps you ned to share the load with other family members if possible which will then allow you some breathing space. That phone sounds like a good idea and perhaps you could also arrange some social care visits for them, which again will allow you to cope a bit more with your own problems. Just be aware that with PA, the stress of this can affect your PA and you could end up with shingles, as it did with me.

Thanks for unloading here with us. Its allows us to se the world from someone elses view point and gives us a glimpse into how people cope with not only their own problems, but also while dealing with their familie's health.
Its a real eye opener.
Hope you can acces the help you need both for you and your mum and dad.
Feel free to offload here any time you need to.

[elliejay]

Hi Scampi
I really feel for you, I know how bad it can get. Hang on in there.
Do you have any other family that can share the burden ?
My Mum was in hospital with bowel cancer and having to have aterial grafts. My Dad has Alzheimers, so I was left with looking after both of them whilst trying to work, look after my own home and help out with my daughters both of whom have arthritis and small children.
All of this whilst half the time I was on crutches ! I'm sure my own health suffered.
Try to give yourself some time to yourself and don't be too hard on yourself.
Can you speak to your GP ? Also find out what other help may be available to your parents, ask social services, they can send OT and physio who can help with falls etc.
Worth trying the MTX, if you find it causes too many side effects then you can always stop for a while but you may be fine.
Wishing you all the best
Ellie  

[babyblue]

Hi Scampi,

None of us could just read and run, your post deserves a reply.  It must be so difficult for you ... just wanted to send you my very best wishes and hope the situation eases for you or you get some support that enables you and your family to cope.  Remember to look after yourself in all of this - I know you want to do all you can for Mum and Dad and thats admirable - but who looks out for you? 

Thinking of you and wishing you well
Hugs
BB