A bit of a ramble..

[Vo321]

I'm hoping what I'm about to write will resonate with someone. Having chronic illness/es can be so debilitating at times and very few people seem to understand or acknowledge this. I decided to accompany my mother on a shopping trip into town this afternoon and I just couldn't manage it! As we were walking, I could already sense it was gonna be 'one of those days'. Before we even got far we had to sit on a bench as I was feeling very lightheaded. I picked up a few items but I had to get a taxi home and leave my mum in the city centre, as my energy levels were just depleted. It breaks my heart because it worries her sick too (she often feels helpless). I'm 23 years old (soon to be 24) and it kills me seeing other people my age living out their youth, being healthy and worry-free. If I feel like this now, how will I feel in 10 or 20 years time from now? I don't ever want to be someone's burden. I'm terrified to walk about alone; in case I pass out from the constant foggy brain that never seems to go away. At times I feel useless and at other times I feel guilty because it could always be worse (like what do I have to complain about). Another thing that gets me down is that I want to become a parent one day; but how on earth am I going to be one (or at least a good one) if I'm going to be too tired/sick to properly look after my kids. I don't work but I am a university student. I took some time off uni about two years ago; if I was to take more time off, I might be 50 by the time I complete my degree. 😆 I know it's kinda silly but sometimes I ask myself if I brought this upon myself (like why is my body failing me). Sorry for rambling; I just needed to get this out. Thank you for reading!

[Mooka]

I don’t think that anyone that doesn’t suffer from fatigue can really understand what it feels like. Are you in remission? Some people go on to run marathons and climb mountains when they have achieved remission and some have children. Personally I still have to pace myself. If I am going to go out in the afternoon I would rest in the morning. I rarely go to the shops but if I do I know my limit is about 2 hours so I would prioritise what I need to do. It’s so sad for you to be like this at such a young age but don’t give up hope that your quality of life will get better. There’s also plenty of research going on into the causes of fatigue and you are young enough to hopefully see any benefits of that research. I hope you see some improvement soon. X

[Vo321 in reply to Mooka]

Hi Mooka,

My last bloods showed that disease activity was low. I have been off steroids for about 1 and a half years. I get bi-annual Rituximab infusions. I think people who run marathons, climb mountains etc. will have achieved such an accomplishment in doing so; that is inspiring to me. You're completely right on pacing yourself. When the fatigue is really bad I start thinking about what to "ration" my energy on. Thank you for the encouragement. Well as they say, "there's light at the end of the tunnel." and I certainly hope we all get to see it. All the best,

Vo321

[Suzym2u Moderator Vasculitis UK]

Do you talk to others who are in a similar situation to yourself? Maybe a local Vasculitis Support group or an online support group for young people?

[Vo321 in reply to Suzym2u]

I don't personally know anyone with Vasculitis. I would definitely be open to finding a local support group and hopefully meeting other young people who have the same disease.

[JGK99 in reply to Vo321]

Do you have a specialist centre near you - are you in the uk ? If so the web site Vasculitis .org.uk has lots of information and helplines and centres near where you are . There are regional meetings through the year too where you can get together with like minded people .

I found it incredibly helpful to me when I was first diagnosed .... good luck !

[Vo321 in reply to JGK99]

I am in the UK. Thank you for the heads up! 😊

[Sheep90]

Hi there,

My husband has vasculitis and your situation really resonates with me. It's hard to see your loved one suffer, especially when you're used to them being so active and full of energy. That said, there's absolutely nothing I wouldn't do for him and caring for a loved one when they need you is part and parcel of loving someone He's in no way a burden because he always has, and still does, fill my life with joy. He was only diagnosed this year and is still receiving treatment which has been off to a mixed start. It's so hard when you're told 'you have GPA and treatment will be X' only for them to say 'actually, X often doesn't do the trick, so we're going to need to try Y, and maybe Z, and then cross our fingers for a bit'! So far, rituximab hasn't done what they wanted and he's now on cyclophosphamide and has had a few surgeries. We can't wait to have a week in which he isn't seen by a medical professional!

We also don't know anyone living with vasculitis and are young too (he's 27). We're about to become parents for the first time (take that cyclophosphamide- you won't stop us!) and my husband is currently doing a PhD. No ambitions to run marathons or climb mountains just yet; we're just hoping to stay awake beyond 9pm and aim for remission. It seems that pregnant people and people going through chemo have a lot to share-- and not just prescribed antiemetics We're very much in this together.

I think the one thing I have to keep reminding myself is that worry is only ever about things that haven't happened yet. I think worrying is so easy when seeing real life success stories hardly ever happens because the disease is so rare. One thing that's important is to not conflate illness with personality. Personality is one thing your illness won't change and so if you're the kind of person who would make a lovely parent, then vasculitis won't take that away from you. I have to catch myself when I find myself worrying about how we'll cope with a little one when my husband still has an active disease and hasn't achieved remission before but all I can tell myself is that worrying is normal and if he were perfectly well, my worries would be replaced with something else!

Good luck!

[Vo321 in reply to Sheep90]

Hey Sheep90,

Thank you for taking the time to write such a beautiful response.

Firstly, congratulations on the pregnancy! You must be overjoyed.

Hearing what your husband has gone thorugh; I must say he has a very special woman as his wife. A lot of the time we hear from other sufferers but rarely the carers. It is very common for us to feel burdensome but as you said "when you genuinely love someone there's nothing that you wouldn't do to help them".

Considering that he has just been recently diagnosed, it's very common at this stage to go through a "trial and error" period with different meds. Which can be very frustrating! Hopefully the cyclophosphamide will do the trick and he can achieve remission with it.

He's 27 and doing a PhD!! (If that isn't determination I don't know what is). The way I look at it, the marathons and mountains don't neccesarily have to be physical. When I try despite feeling the urge to quit or when I have faith despite experiencing doubt ; I've climbed the mountain, I've run the marathon.

You're absolutely right about not allowing the illness to define one's identity. I have Vasculitis but Vasculitis is not who I am.

Worrying is completely normal. The more we get comfortable with it, the less chances it gets to make us feel uncomfortable.

I am sure you and your husband are going to make phenomenal parents!

All the best....

Vo321

[danerd1960]

Wow I hate you have this ridiculous disease at your young age! I was 57 when it surfaced. I was an overhead crane operator & worked 48-60 hours a week. On my off days I was always busy with yard work or home improvements. I am lucky most days if I get off the couch! I was in remission for a little over 2 years with a combo of methotrexate, prednisone & Imuran.

I had a relapse this spring & tried Rituxan but it did not work for me. I will be starting cyclophosphamide tomorrow and it has many side effects. I hope it works as I would rather be busy than flat on my back. Hopefully you will find something to help you!! ❤️

[Vo321 in reply to danerd1960]

Hi danerd1960,

It sucks! But I try and remind myself that going through such a battle only strengthens us in a way that "regular" people may never know. Sometimes we have to slow down our pace and go in accordance with our bodies. (Annoying as it can be!) I'm glad you were able to achieve remission for 2 years! I have been using rituximab for well over a year and it has worked quite well for me. It can be so frustrating when meds need to be changed or do not work for you, I'm hoping that the cyclophosphamide will do the trick for you. If you are worried about the side effects , discuss it with your consultant. I'm sure the reason for you being given this medication is to ensure maximum efficiency and to help you achieve remission again. Thank you for sharing!

Good Luck,

Vo321

x

[danerd1960 in reply to Vo321]

❤️❤️