Sooo I have been on the search of feeling somewhat normal and doing normal things like ..... drinking a couple of glasses wine with my evening meal .... have been doing this in and off now for couple of months in the hope I feel how I did a year ago before I fell ill and ended up with this 😢 however those glasses of wine are not the same and most of the time I feel awful x sorry for the miserable post but I just feel so lost 😢 I have a few good days and then do too much I drink some wine and feel awful I know I need to accept things have changed and that things are not the same but I miss the old me. So sorry for my self pit post but I’m having a really awful day and very under the weather
Alchohol and methotrexate / hydroxychlorine - NRAS
Ahhh please don’t apologise, my battle is similar to yours - I still struggle so much (2 years in) & miss the old me so much. Talking on here does help hugely so you express as much as you need to! It can be such a long lonely journey that no one around us can quite see. Why was today such a tough day? X
No apology necessary. Such is life with Arthur, I’m afraid...ups and downs. I’ve learned to accept it for what it is and just to get on with things at a slower pace. Make the most of the ups and get through the downs as best you can. The COVID malarkey hasn’t helped, but things are improving (and the weather!).
I miss the old me too and I mourn the future I had planned. I often feel like a burden and stop my family from enjoying things as they don’t want to leave me behind. Thankfully I inherited a sense of humour . My family have always found laughter in the worst of situations . Laughing keeps me going .. somedays are better than others .. it will pass . Don’t bottle it up it’s better out than in x
It’s hard getting used to and accepting a different way of living. I’m m two and a half years in and still finding it difficult.I don’t feel like me either,I used to like doing things spontaneously ,now everything has to be planned.i have autoimmune conditions plus RA,also a lung disease. Ifeel lonely sometimes even though my husband is very good.take care.
So sorry that you are going through such a low patch. It seems to me that I live my life constantly expecting something that will never happen, i.e. that I will return to my pre RD self. Get so annoyed at the things that I cannot do and the pain and fatigue that I suffer when I do try and do things which I used to find easy. So, you have my understanding and all good wishes. xx
It is horrible time I used to do everything when I wanted now my body tells me it s like I have no control now I can clean oven etc then I have to lie down it gets me down but I have a good partner and I have to accept this is how life is now took me about 3 yrs though so keep your chin up stay safe x
Thanks for your support everyone. I think today was just long and everything got on top of me. I normally just roll along but today maybe was my turning point where I have to accept to do things differently. My husband is amazing and has taken over cooking most nights bless him so that really helps and I know I’m so lucky to have someone who understands x I think I just had a day of feeling wiped out and it just got on my nerves 😂 and I felt overwhelmed with that under the weather feeling along with tiredness. Thanks guys appreciate your comments very much x
Have you thought about seeing a counsellor? It might help, particularly if you find the right one. I was diagnosed with severe RA five years ago and it took over two years to get it under any kind of control so I took the advice of some friends and had two sessions of counselling. Honestly, it worked really well.
Life may not ever be the same for you as it was. That’s a fact I’m afraid, but understanding that and not turning in on yourself will make your life so much easier to see that yes, it’s different, but the difference doesn’t necessarily mean it’s bad.
When I’m having a particularly bad time, I call the same counsellor and spend an hour offloading on him.
Hope you feel better soon ❣️
That’s a good idea and will give it some thought x
Sorry to hear you’re having such a tough time Gottaloveastaffy. I wholeheartedly agree with the suggestion to try counselling, it has helped me come to terms with my RA.If your low mood continues it may also be worth speaking to your GP about it.
Hoping you feel much better soon!
I am with you sister 🤚
Some days are alot better than others so my new mantra is one day at a time. Life is like a box of chocolates 🍫 ha ha yesterday was a coffee but I'm hopeful for the Turkish delight 😋
There will be days when the wine tastes good though, I am the same and I don't really enjoy booze anymore but there were a few nights when that french beer tastes good xx
I thought I was bad with my original problems but Long Covid has added a new level of issues. I hanker after the old arthritic and asthmatic me now. I can’t tolerate alcohol at all so am now tea total and ruined.
I didn’t drink for ages as was too scared x so maybe just stop and get things in perspective x
I am now 13.5 months into this altered state so am thinking it may be a permanent existence. Alcohol is the least of my problems. I am now under a neurologist, respiratory team, speech therapist, as well as my Rheumy and the GP calls me every 2 weeks.
You have my sympathy. I like a drink too but I've had to experiment since RA and methotrexate. The good news for me is that I've found some really acceptable low/no alcohol beers and gins. The bad news for you is that all the low/no alcohol wines are disappointing but the industry are working on it. I hope that you find something you like and the best part about drinking is meeting friends over a drink which doesn't need alcohol. We've got a lot to celebrate with the U.K. opening up and summer to come so I wish you better days and happier times.
Acceptance of this disease is hard. We each have to find our own way to do it, and talking to a counsellor may really help you find yours.
But you do get there. Life is not how I planned it, and I have moments of sadness about the things I will no longer get to do. (But age causes that too 🙁 so can’t blame everything on RA.). However overall life is good. I hope you get to that place too.
We all have bad days and the beauty of this place is that there's always someone to sympathise and support.I realise that I'm very lucky as, at the moment at least, I don't feel that I'm being stopped from doing anything I want to do. To put it in context, maybe it's just because I'm happy not doing the things that I "can't". For example, I don't drink, have always hated housework, have never exercised (although I'm trying to change that!), rarely travelled abroad for holidays....
My RA is well-controlled atm and I realise that might change but at 61 (eek!) I'm also aware that I'm lucky in that I'm happy to take things a bit slower these days although I still love my work and want to keep doing it as long as possible.
Interestingly, my diagnosis was almost a bit of a relief as it explained why I seemed to have less energy and stamina than my friends and work colleagues and I've been able to accept that yes, I need to make some adjustments but doing so means that I can continue doing the things I love. I suppose that after my husband's stroke we went through a similar period of acceptance and adjustment and this was just an extension of that.
Sorry for the essay - just wanted to sympathise but also to say that life can be good despite this unwanted companion.
3 years in and I still miss having a glass of wine, in truth I have to look after my liver as explained by my Rheumy the drugs are hard enough on the liver 🙁 So my thoughts are I will be a cripple if I can’t take the meds, so I have to look after my liver, hence no alcohol ! But yes I still miss it 🥲
It is not easy, the old you can easily get lost, it has happened with me too. I can empathise with your fatigue. I don't drink any alcohol at all and haven't done so for 4 years. I lost the taste for it and found it was creating more problems for me health wise, it just wasn't worth it.
I'm at the stage I don't miss it at all and find the smell quite awful. I used to love my wine and G and T. Now if others are having alcohol I have a long fever tree tonic with ice, lime and some fresh mint if I have it. Beautiful. It stops others asking relentless questions about me not drinking alcohol and I feel I have an adult drink. Mocktails are great too.
It is good too talk, people on the forum understand, let it out.
I know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I MISS my RED WINE so much. So so so so much. Even watching people on tv drinking red wine makes me salivate. I bought a soda stream and drink the sparkling water out of a campaign glass. It doesn't really help. I know how you feel and I am happy to join the pity party!
Awwww that made me smile 😊 i have been addicted to diet lemonade and ice along with sparking water with lime and ice since I was poorly last year 😂 I think I just realised that nothing is the same anymore and it smacked me in the face like a brick and caught me off guard !!! Might get a new gas for my soda stream 😄
I've had RA and pernicious anemia for 16years now diagnosed at 40years old.I take methotrexate and I can only give you my experiance I know everyone handles this medication differently.
When I was first diagnosed the pain I had was unbearable couldn't get out of bed and I've given birth with no pain relief and the pain with RA was far worse.
Anyway on a positive note the methertrate seems to work for me, I now walk my dog each day and do the things I enjoy in life.
I enjoy a glass of wine at weekends in moderation, but that's what ive learnt with RA do everything in moderation and look after yourself and eat well. Also I find if I put on weight it flares up my knees and feet which I hav during covid.
Also find time for yourself and relax and chill and be quite selfish at times when people demand too much from you.
Make the most of your good days and listen to you body on the bad days and rest.
I hope this is of some help.
I used to get annoyed by all the things I can no longer do. We have to change the way we think and go about our new life. There has been so many new positive things in my life as a result of the negative of this condition. A change in activities can will also bring more new friends into your life which is always good.
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