Sorry I’ve been quiet!!: Remember when I first posted... - NRAS

NRAS

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Sorry I’ve been quiet!!

Hels1989 profile image
22 Replies

Remember when I first posted when I said I wanted to do the trip of a lifetime to Disneyland Paris? As my partner had got a big tax rebate and it’s was my one and only chance at taking my children on a holiday like this? Well I did it! In June. I walked around for 5 days and yes I paid for it massively when I came home but it was so so worth it! Trouble is now I’ve been back a couple months and could never afford something like that again I feel very depressed about never being able to go back as honestly it’s the one time I’ve felt truly happy since I began my RA journey over a year ago. But I did do it 😁 I said I would for my kids and I did. I was so unbelievably proud of myself.

Anyway, as you all know I’m currently on mtx and hydroxychloroquin. A couple weeks ago I switched to mtx injections to try and give myself a boost as although I wasn’t getting any side effects from mtx my rheumatologist decided my inflammation is still too high and rather than another doseage increase switching to injecting may help. Also she wants to add sulphasalezine (sp) too. The thought of injecting took a few days to get my head around but after doing it a couple times now I’ve realised how easy it is.

I am very very down and depressed due to my illness and other things in my life so I’m seeing a doctor soon to see if they can help with my depression. I’ve been on antidepressants before and they really helped me so maybe that’s what will happen again but I just want to stop feeling this way. How is everyone else? I am sorry I go quiet for months at a time, im just the kind of person who feels like if I talk about it it’s more real but I know I need the support and I definitely like supporting others xx

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Hels1989 profile image
Hels1989
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22 Replies

Aw hels, lovely photo: bet your little ones never forget that one 😀: I dip in and out too, depends on what else is going on in your life. It is a funny old up and down disease, sorry to hear you’re feeling low, I did cbt for a while referred by GP, after drugs etc. Did it help? Yeah a bit. I think if you inject MTX it gets more into your system. Stopped now, waiting on biologics, all these drugs worry me but so does RA: hope you get some respite soon xxx

Hey Hels,

That was a wonderful holiday that you had, and good on you:)

Sometimes we reflect on what felt good and believe that we have to go that far again, in order to feel good again. I was diagnosed with RA in Jan this year, and it’s been a bit of a shock.

There’s a good saying which is “stop looking in the rear vision mirror” - meaning, love what you’ve experienced but don’t live the rest of your life by that one moment. Keep looking forward towards the next experience. How you physically feel may mean that the next experience is different.

I take anti-depressants, have done for a long while, for reasons that preceded my RA diagnosis. My thoughts on this is that one needs to put time into developing resilience and understanding of self. CBT is good for fixing some issues, but if they’re long term (like a chronic illness) - then consider a long term practice of sound mental health stuff - like mindfulness, relaxation and spaced visits to a psychologist or preferred mental health practioner.

I wish you well on your journey, cheers Deb :)

Well i'm glad you've managed a holiday, plus your children will have fond memories of it, which I'm sure you do as well, seeing their happy faces.

Sorry to hear you're not at your best at the moment, if you feel you need that pick up again with the help of antidepressants, then I would definitely go & see a doctor for their help & advice.

We all have our moments when we don't want to interact with anyone, but like others, I just pop in out of this forum, without responding to any of the post. 'We're just in the background, observing' 😉

But, glad you haven't left us, as we're all still here for you.

Ruth xx

Hels1989 profile image
Hels1989 in reply to

Thank you ruth💖

AgedCrone profile image
AgedCrone

Never say never Hels...you are very newly diagnosed, & as you say you are still not settled on the right meds. It's only natural to feel as if there is nothing to look forward to...but of course there is......you have two lovely children to bring up.

Everyone coming home from a great trip like you have just been on is a bit down...they are happy but broke & you have the added downer of having uncontrolled RA.

OK you won't be going on trips like that every year, but then an awful lot of people don't make a trip like that even once...... So well done for taking the children on such a lovely holiday & giving them such lasting memories.

Your RA will hopefully soon be more controlled & you can start looking forward to taking the children out & about......there really are fun things to do with children in this country....especially if we have the lovely weather we have had this year.

Most of us on here have been on the trek you are on trying to find the RA drugs, & it is so disappointing when yet another drug doesn't help....but your rheumatologist will find the mix that will help you.

But as you will understand from reading here it can be a rocky old road.

So try to put a postive spin on things.......& look forward to being happy & feeling well again very soon.

Hels1989 profile image
Hels1989 in reply to AgedCrone

Thankyou lovely sometimes you just need to be told that things will turn out brighter. I absolutely cherish my children and would give my last breath to them and with this disease I always feel like I’m letting them down. But I do know they adore me too and I have to hang onto that.

Thankyou again for your kind words xxx

nablur profile image
nablur

So great that you made your dream come true! That gives you memories to think about when you feel down!

Acknowledging that you are depressed is half the battle! Try to do one Nice thing for yourself each day. 🤗

And do try the antidepressants!

Hels1989 profile image
Hels1989

Thankyou Hun x

Mmrr profile image
Mmrr

Things will get better hang on in there.

Need2knowN profile image
Need2knowN

Hi hels! I’m also 29 & a Disney nerd! I totally understand what you mean too! It’s ironic that the last time I was there was for the Disney Run 10k! I dressed up as Tiana! There’s a group on fb called “Disneyland Paris for Brits” and you can see how people go on a budget! Enough about Disney! I’m sorry to hear you are feeling low, I’ve suffered with depression & anxiety for most of my life & I find that the best treatment is a combination of medication & talking therapy. You’ll be ok but in the meantime please pop on here & let us know how you are doing x

Hels1989 profile image
Hels1989 in reply to Need2knowN

I am on that Facebook group 😊 although I’ve been avoiding it since I came back as it makes me feel worse as I’m not there haha.

Thankyou for your kind words it’s just finding the courage to ask for the help

With me. Xx

Need2knowN profile image
Need2knowN in reply to Hels1989

How funny 😆 you already were on it! Sensible boundary avoiding it if it makes you feel worse! Take care! 💕

Lizard28 profile image
Lizard28

Hi hels, I know just how you feel, I'm just back from dlp, a trip I thought I wasn't gong to get to as my doctors all said no travel. I've just been diagnosed with cancer and they wanted to start my chemo. One of the biopsies took so long to get back that my hematologist said 4 days would be OK and off I went. My daughter paid for mine and it was a kind of surprise trip till this happened to me. My little grandson who just turned 5 came as well. I was lucky to get a green pass which was really good. It was tiring but I loved every minute of it. Memories were made, good ones. Chemo started two days after I got home. Now I'm sitting in bed this morn, my hair falling out, quite depressing really, but I smile when I think back on that lovely holiday. Keep happy thoughts hels, happy memories, that's what I'm doing. Take care xx

Hels1989 profile image
Hels1989 in reply to Lizard28

Oh honey I feel awful as I have no reason to moan with what you are going through. I got the green pass too which was amazing! Sending so so much love and healing vibes lovely xxx

Lizard28 profile image
Lizard28

Thank you hels, your lovely photo made me smile this morn. I must have went on "it's a small world" about 20 times lol. That tune, it will either make you cringe or smile. My grandson sings it every time he sees me lol. I have to laugh. Don't feel awful about having to moan, believe you me I do have moan time but I'm trying to stay positive, difficult as it is, but thank you for posting, keep smiling, sending hugs to you too. Xx

Bookworm55 profile image
Bookworm55

Hugs 🤗. X

I am so glad that you had such a wonderful time in Disneyland Paris. I know exactly how you are feeling now, because we went to Disney World two years ago and when we were back home, I felt so low and depressed and as if nothing good like that would be possible again. You will get over it, believe me. I struggle now to manage a holiday of any sort, but while I can, I will struggle on, but I do get down when I think of what is to come as I am getting so much worse all the time. I have been on antidepressants for many years now. I was always a cheerful person and couldn't understand people who got depressed until it happened to me and I realised that you can't just "pull yourself together" as some people seem to think.

We have such a horrible disease and I have so many other illnesses as well, 27 different conditions at the last count. You must congratulate yourself for managing this holiday and giving your children such wonderful memories. As you can still manage to walk, even if you pay for it afterwards, I am sure that you will manage holidays for a while yet. It doesn't have to be abroad, I think your children would enjoy a seaside holiday in this country too.

Sorry to have rambled on a bit.

Hels1989 profile image
Hels1989 in reply to

Thanks Hun hopefully il feel a bit better soon xx

Soreknees2016 profile image
Soreknees2016

Aw - that’s so fantastic that you made a dream come true! It’s only natural to feel down after a wonderful holiday experience, especially if it’s on top of other issues, but hopefully antidepressants will help you through this. But just think of how far you’ve come since you first joined this group, and the wonderful thing you have done for your children (and yourself) - that’s one of the first things you told us you wished for, and you did it! Stay strong - things will get better in time. 😀

Hels1989 profile image
Hels1989 in reply to Soreknees2016

Thanks Hun. I hope so too as I hate feeling this way it is just horrible xx

Gnarli profile image
Gnarli

Hi Hels. It's good to see you again even if I wish you didn't have to be here. Your holiday sounds amazing and there's no reason to suppose you won't have another. I'm truly sorry to hear you're feeling so down at the moment but, given your disease and post holiday blues and life in general, it's not really surprising. I reckon most of us get really down at times. I know I do. Anti-depressants and CBD can help and well worth a try. This too shall pass. Hugs

J

Hels1989 profile image
Hels1989 in reply to Gnarli

Thanks for your lovely post. Everyone’s posts do help me feel a little better even if it’s only for a little while. Yes I think it’s all part and parcel of the disease sadly. Thanks again and sending you lots of love xxx

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