Cancelled again

[chaimee]

Went to hospital for my check up yesterday after two being put back by 2 months,told my appointment was cancelled,should have had a letter,which I hadn't received had to pay £3 parking for nothing.so upset cried all the way home went to bed still cry ing when my husband got home, he's never seen me in this state befor,in 40 years of marriage .everything came blurting out how I have been really feeling since I was told I had a C T D. I have no energy can't do house work gardening so exhausted, house looks like a tip ,have always been so house proud,ant look after the grandchildren , have problem now find it exhausting going out to dinner with friends to much noise,I Never see the same rhumy ,every Dr tells me something different , go home read up on lupas, the next Dr it's only Fibro. Then your bloods are ok ect ect. At my own Drs I have given up going it was very good at one time , but now when I phone I only ever get the locom or wait two week for a particular Dr,I given up when I go to the Dr I don't want to wait, I m at the point my healthy deteriated , IBS worse than ever afraid to go out with it ,I sleep for England ,my body feels like a lead weight I could go on,just want to crawl into a ball cry for ever.

[Barnclown]

This is dreadful: am vvvv much feeling for you chaimee....am so glad you've posted! Am sending you a big, gentle virtual hug....seems to me these low times are part & parcel of life with lupus...but my feeling is that you're in a particularly tough phase and I'm wondering if you may be at the point where a fundamental change might help, e.g. a move to a new GP practice? Am sure you'll get some good replies..take care, take heart 🍀🌻

[chaimee in reply to Barnclown]

Thanksbarnclown,trying to think what to do.

[Barnclown in reply to chaimee]

Your reply to effie's excellent suggestions sounds just right ...being the empowered patient is the way to go...show yourself & the system that, even though you're feeling v vulnerable and poorly, you can do this...with your dear family & the family of this forum believing in you: we're with you, every step you take, every move you make

🍀🌻

[littleeffie]

Oh so So sorry you're feeling like that .I think everyone on here can appreciate it. I had a similar recently and said to hubby you can go along dealing with it and then just one thing extra like the cancelled appointment or dropping your tablets down the sink and the foundations you had built just crumble and you topple over .Try not to see it as the all dark overwhelming cloud just take it that you need to take a step back and step by step tick list your daily life so you get the help to build a new foundation to work from.Try ,danged hard as I know as I am still trying after years,to accept the limitations of illness which doesn't mean you can't it just means finding different ways even if that is asking for or accepting help to achieve.

I agree with barnclown ,who is always full of good advice and kind words,that you need to have a good gp as a starting block so changing practice or getting a family member to verbally kick them into line would be a first on the list.In fact rest up and write a pos and neg list and work through it.eg lovely grandkids=pos liist and getting too tired without help to enjoy them neg list .It can make it easier for you and others round you to write lists then work through them one steep at a time.

Hope that helps .Thinking of you

Effie

[chaimee]

Littleeffie. Oh love the list, both of my daughters favourite things,daughter came round today took me out for lunch not that I wanted to go,hubby had to go out today,didn't want to leave me on my own, so I shall start at the Drs , but have made a decision to ask for second opinion,and wondering as I live near London to go to a lupas hospital, or pay and go to London Bridge ,not sure how much that will be. Maybe a start.

Thank for advice.

[Chris21]

Sound suggestions from others, I would add when going to any appointment take someone with you. It's surprising how much the unwell person doesn't hear everything being said or doesn't 'fight' their own corner.

It sounds like the worst thing is they keep changing there mind as to what diagnosis you have, therefore which medication would help you.

Hope today is a better day for you x

[Kate-L]

Hi Chaimee and I was so sorry to read your post, you really are having a tough time. As usual there has been some great advice already given and I totally agree that you need someone with you when you go to your appointments, it makes the world of difference having someone to support you and speak up when necessary. I'm also wondering if you need to change your hospital. I have been in a similar situation to you, and it was only by changing my hospital and doctors did I finally get the treatment I needed. It wasn't easy but it was so worth it. I wish you well and send a great big hug xxx