I'm important too!

[Jessie_2014]

Hello all,

As some of you will have seen through previous posts, I am 26 and have had a 9 year battle to get answers and help.

This week I went down to Swindon to see Dr Price (8 hour round trip). This has provided me with much needed answers and some treatments for me to try. For the first time in years I feel as though I have some hope.

I have made the decision that I need to stop beating myself up and need to reevaluate what is important to me. For years I have battled on working full time which has come at a huge cost to relationships/social life etc. I have now decided to drop my days and try and find me again. I used to have so many hobbies and dreams and I want to find these again (albeit scaled down!) I also need to start exercising and finding the energy to focus on my diet etc. Things which are not possible when I'm permanently exhausted.

I know I have many battles ahead. One being trying to gain PIP (any advice/support would be appreciated) and also to try and find a way to stop being angry about my diagnosis and medical mismanagement and find a way to accept/adjust and to move forward.

I'm not really sure what the point of this post is but for the first time in a long time I feel I have some hope and I wanted to share this.

I pray that today is the day that you all find some hope too.

[thyro1]

That is fantastic Jessie

I think it is very helpful to hold onto that feeling as it is so easy to be overwhelmed when you

don't have answers or indeed energy to live in the way you did previously. I can relate

entirely, I saw the fantastic Dr K at the London Lupus Centre yesterday and he has given me

inspiration to try some treatments and pilates and sort my diet out and keep trying in spite

of how I physically feel. I am quite a bit older than you and spent years exhausting myself

putting work and everyone else first, take time for you and if necessary reduce the workload,

it can help. regarding PIP, it is best to get advice with the form filling, it is complex and

worded in language which is rigid. Some local authoritys do have welfare advice sessions but

they may be few and far between, CAB can sometimes help and there are on line places like

benefitsandwork (all one word), which have great advice.

wishing you all the very best, as you know I'm sure this forum is a wealth of information and support thanks for the uplifting post !

T

[HelenL75]

Good for you Jessie - I probably need to get this point as well - good on you👍🏼

[Mybe]

Hi jessie ive had lupus for over 30 year's. And it took 20 years to find out i had lupus. I was very lucky just over 10 years ago i was very poorly and my doctor was away. And it was astand in. He took some to test me for lupus. And came back that i had lupus. Up untill then i had tesed after test. But not a lupus one. Untill that day. I get very bad headache the butterfly rash and i get very tied. It take all morring to get going. Then at night i do not sleep. I also have other health issues has well. Good luck and i hope the find out soon for you,l

[Loopyloo43]

Hi. I think over time we who have these conditions beat ourselves up a lot fir not being able to do what is the normal so we over exhurt. Ourselves in everything we do to accommodate everyone else in this we lose ourselves and what is good for us which in turn makes us feel even worse over time . So am so glad to read that you are looking after yourself. If it feels right do it if it doesn’t don’t or scale it down. You will feel so much better for it . Wishing good luck in your endeavours xx

[Supul]

Hi Jessie_2014

You are on the road to recovering from the side effects of not getting heard, understood and treated well from previous medics. Most of us who suffer autoimmune, invisible illness, have suffered too.

I was not formally diagnosed until I had collapsed, 4 months after I retired. Autoimmune sjogrens query lupus had shown in my blood test 9 years earlier. I had not been informed. I pushed and pushed myself at work, in life! I was seen as, and treated as different, difficult by so many people who had no idea how much I struggled to keep up!

Thus, I am so very happy to see you are ready to do right by yourself and by how you feel. Sounds like Dr Price has given you permission to put your wellbeing first. Fantastic! This, I had to learn the very hard way!

Good luck. Onwards and upwards now! X

[Lupus1980]

Hey Jessie! Ive had lupus for 38 years and gone thru 2 kidney transplants because of it! I have 2 wonderful boys (men now!) to which I was told I shouldn't have kids! Lupus is a terrible disease, but if you take your meds and eat healthy, KEEP you Drs appt.s, you CAN live a CONTROLLABLE life ! Do what you can..take it one day at a time!