Feeling absolutely hopeless

Rj14

Hello all, I was diagnosed in March 2023 with RA after symptoms appeared out of nowhere in the middle of Jan. me and my wife have 3 children, a 2 year old and twin boys aged 5 months. I was diagnosed 2 days before the twins were born 😱 it’s been a horrific year for me so far to be honest and I’m really struggling.

I’ve been on oral methotrexate, sulfasalazine and now on methotrexate injections. I’ve had 2 courses of steroid pills and 1 steroid injection which has now worn off and my swelling & pain is at an all time high. My GP has prescribed me with anti depressants and morphine as I seem to have become to used to the strong codeine I’ve now been taking daily for 8 months.

I am really struggling. Physically & mentally.

I can’t do much with the babies as they are so physically demanding, just changing a nappy or holding a bottle to fed them puts me in agony, I find myself naturally trying to spend less time with them, which upsets me. I am able to spend a lot of time with my 2 year old and he is a lot less physically demanding. I think this is the only happiness in my life and the only moments that bring me joy.

My wife hasn’t been supportive throughout the last 8 months, and has/is really struggling to get to grips with this new version of me. I was always the one who could do anything and would do anything to help anyone. Now I can barely wash my own hair and have to use a gadget to open the milk. I’ve turned into an old woman at the age of 36. I work full time on a laptop from home and luckily I have managed to keep this job going throughout this challenging time as I am the sole earner for our household. However this I am struggling with as I’m just so exhausted and mentally confused with brain fog so not sure how long I can continue to get away with this before someone at work pulls me up.

I don’t know what to do, I’ve had 2 weeks of methotrexate injections and my consultant has told me it can take up to 12 weeks for it to take effect & I can’t try any other drugs until that 12 weeks is up, that’s the end of October!!! How the hell am I going to make it to then! I genuinely feel I’m going to end up hospitalised in the next few months from exhaustion and swollen joints. My GP says to push the rheumatology team for more steroid injections but they weren’t that effective to be honest.

I just don’t know what to do, who to go to, where to go, I feel like signing myself up to a old age care home and just sitting in a corner and slowly fizzling out. This disease is killing me mentally. I have no one to talk to as my wife calls it “moaning” “being miserable” being negative” and I’ve lost all my friends from being so flaky and not being able to go out to do things. I’m in pain constantly, even a slight knock on my toe from my toddler feels like someone has hit it with a sledge hammer. I feel like I’m nearing the end of how much I can cope with mentally before I have some actual mental breakdown.

lukej

different meds have different effects on different people - so sorry to hear that you havent found one that really helped. I totally get how when youre in pain trying to deal with anything else seems pointless. But its so worth when you do find something that lets you focus on your life again!

For now, since youre feeling down looking so far ahead, try focusing on something right in front of you, like eating full healthy meals 3 times a day. Idk if youre already doing this, but its an example of a little thing you can hold on to and do over and over to make you happy and get you by. Im with you brother!

CarylW

Hello @Rj14

It sounds as if you as a family are going through a really difficult time, and it must be hard on you and your wife with three small children to look after. @lukej 's advice is a good start: maybe it will help until the meds take effect.

Perhaps you could also give our helpline a ring (number below) - talking is always helpful when you are feeling down, and the person you speak to may have other ideas to help when you are struggling.

If you haven't done so already, I would also suggest contacting Citizen's Advice to see if you can get some more help financially. You can telephone, email or visit if there is a branch near you, and there is also a huge amount of information on their website.

Good luck and please keep in touch with us.

Best wishes

Caryl

Woofy

https://community.versusarthritis.org/discussion/60789/feeling-absolutely-hopeless

Hi Rj14. I am so sorry you have been going through all of this. I was diagnosed this past year.

I am much much older than you, but I can tell you the pain is like nothing I have ever experienced. I found this group, which without doubt saved me. Do you have a specialist RA help line that you can ring to let them know just what’s going on?

you have to tell them that you are struggling to cope on many levels. Mentally you have had to come to terms with losing your mobility. Trying to get your head around this whilst you have such a lot going on with such young children. Please don’t be afraid to ask for help. The meds unfortunately take a very long time to get right for a lot of us. Please hang in there. The only respite I get is when I take the steroids, but we know this is only a short term fix.

i have an excellent rheumatology department, that are doing their best to find me something that will help, but I know this can be a very lengthy process. Sometimes other members of the family don’t understand the impact this horrible condition has, my husband still struggles to understand the pain I am in, and I have accused him of being insensitive at times, which I know deep down is not at all the case. Take one day at a time, do as much research as you can on this condition. I am sure you have already tried wheat pillows, hot tubs etc, so I won’t even go there. Be as strong as you can be, you will get through this. Good luck.