Alternating between wanting to scream and shout and wanting to curl up in a corner and bawl my eyes out

[pattypatchwork]

Am busy alternating between wanting to scream and shout and wanting to curl up in a corner and bawl my eyes out.

Was diagnosed in July last year with Lupus (it was "stumbled across" whilst the medical profession tried to work out why my left index finger had been swollen for over 12 months) This was when I joined the forum

Long story short, I am on hydroxychloroquine 200mg twice daily since July 2019. Was taken off it for a short period whilst they tried to figure out if my left eye issue (blurred vision) was caused by the medication (thankfully not) Finally had an appointment last week with an autoimmune disorder consultant who is lovely. He told me that my blood results point at an autoimmune disorder, Lupus is the winner in that category, but they are unsure as to how it will develop in me as my blood results are "unclear" He has said that I should consider going on Methotrexate to help with joint pain, which is not severe at the moment, and that my future may hold dialysis etc. Having read the leaflet he kindly gave me on this drug and seeing that it is a Chemo therapy drug (although I would be on a low dosage) I feel if I have been knocked sidewards.

I have a very supportive partner and parents but I feel I have to put a brave face on so they don't worry themselves sick. My employer is also very supportive (thank fully)

You have all been so supportive previously so I just want to ask - are these feeling normal? I have had "helpful" comments from work colleagues such as "at least you don't have cancer" and "well, you don't look ill"

[Horsewhisper]

Hi pattypatchwork, I think your feelings are totally normally. Being diagnosed with an autoimmune condition and the ongoing management of the symptoms can be a bit of an emotional roller coaster ride. I can understand you putting a brave face on for your partner and parents but they will want to help and support you in any way that they can. If you feel able, try and share a bit with them from time to time, with regards to how you are feeling.

As for the work colleagues - they might think they are being helpful with those types of comments, but they just don’t understand. Steer clear of health conversations with those people, as they’re just not helping. You have tonnes of support here - we are all on a similar journey and totally get how you are feeling right now. Big hugs 🤗xx

[TwoH]

I completely understand! There is relief in getting answers and a treatment plan although those tend to change as time progresses but it is also overwhelming. We have all been on medications we’ve never heard of or have trouble pronouncing!

I think you must take time to scream. No one wants this. It does change your life. But reality is that for most this never goes away and I have seen people close to me decide to keep screaming instead of living. It becomes your new normal and you can do this!! Never feel badly for just wanting to cry but also find ways to trudge through it and live with joy. Coming in here is so helpful because we understand. Friends and coworkers generally do not but if they love you they will support you which is invaluable.

Methotrexate is a lifesaver for many. I was on it for 5 years. Look to those here with experience with it. Many do well without too many troublesome side effects. Those that had side effects generally went on to injections. There are a lot of options for treatments. Good luck to you!

[HazelW]

I have been on 15mg of Methotrexate for several years now and I absolutely swear by it ! I am one of the lucky ones who has had no side effects & it does a fantastic job of controlling my symptoms - so much so that I have been able to stop some of the other medication I was on.

If you do start it I hope it is is as good for you .

In the meantime - shout & scream as much as you like ! It is a shock to discover you have Lupus but I always say ' I have Lupus , IT doesn't have me '.

I had a wonderfully supportive husband. Sadly he died 3 years ago , but in the early stages that support is priceless so make the most of him !

Lupus CAN be controlled with support & determination.

Best of luck xx

[Hamptons]

I work in a small team and gave them the lupus info from here. Just gave a background and stopped stupid comments. It works as now I can say brain not here or won’t be going upstairs today and they get it. They now tell me symptoms, my admin is Fab and will tell me to put in my gloves if my hands are puffy endures I eat. As I tend to power on and can my own enemy.

People will make stupid comments if not informed.

Worked for me, didn’t sit with my ethos of just get on but was the right thing.

[Florence91]

Pattypatchwork, it is a shock getting a diagnosis or being near to one, so please let your family and friends support you as you need. If they think its a piece of cake, you wont get what you need either! I remember being told I would have methotrexate (MTX) and looking it up, freaking out .... but took it for over 10 years along with hydroxychloroquine, which I am still on. MTX helped my symptoms but I had to take in divided doses as I felt rough at first. It is a journey -learning about your illness, the drugs, the docs etc etc. This group, which wasn't around when I started, is really useful so clock in when you need. If the doc talked about dialysis he may think you have kidney involvement, but lots can be done about that now too. Wishing you all the best.

[wallock]

Hi pattypatchwork

I have been on Mtx for 11 years now and it has worked very well until two years ago so I am now on Tofacitinib alongside Mtx and it has really changed my life. I realise I was just plodding along before and now can live a ‘normal’ life (largely, although it’s always a juggle to keep stable.)

I have had my moments of screaming and shouting but have learned that lupus is something you can’t fight but have to respect and manage.

I agree with a previous comment which said it becomes the new normal. I had a health plan done recently and was completely taken aback when the nurse doing it told me I was amazing. I have forgotten what it was like to be any different! Try to accept this is your life now and enjoy it within your new boundaries. But scream and shout from time to time when you feel like it too! It’s all normal!

As for unhelpful comments, you can try and educate people as even for the medics, lupus is largely an unknown. I was reading the other day that there is research going on into a possible link between some autoimmune diseases, lupus being one, and the Epstein-barre virus.

All the best.