User Tag List

Likes Likes:  0
Results 1 to 8 of 8

Thread: short on spoons again

  1. #1
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default short on spoons again

    This will be a rant...

    My kids are about to be out of school a few weeks early due to a teachers' strike. I totally support the teachers, but it will be very inconvenient given that I don't have the energy to keep up with them all day, they fight constantly right now, and these were the few weeks to get everything wrapped up and finish making plans for my son for the summer (day camps to run him all day because he needs soooo much activity that I can't provide), and to get my daughter ready for sleep away camp.

    My headache is back so badly I can't even really read to do all of the paperwork things I need to do, and I promised my daughter various errands today and need groceries. I feel like I keep letting everyone down and there's no point making any plans ever. But there's nothing I can do about it at the moment but meditate and walk the dog in the hopes that either or both of those things can help, and try to book my babysitter for after school in case they don't. If i have to i can also send her to the grocery store. This SUCKS! I know so many people have it so much worse and I'm fortunate in many ways. I just had to whine for a moment and get it off my chest. I had a break from the headache yesterday and it made me hopeful… maybe the walk will help again as it seemed to yesterday. I've booked appts with my GP and ENT this week (rheumy away and I've been feeling as though he doesn't take me seriously enough), to try to make sure I don't have Wegs in my head. I hope the fact that the headache comes and goes and is alleviated by massage, heat etc. is a good sign that it's my usual stuff and not Wegs in my head, but better safe than sorry. Unfortunately getting an MRI is a long wait here… If it is going to be too long I might look into paying privately. Does anyone else worry about all the radiation of all these scans? i guess it's the lesser of two evils… I'm hoping maybe the ENT will consider putting me on Rituximab as my rheumy doesn't seem to think it's necessary but I'm clearly not in remission, if these symptoms are indeed from Wegener's.

    I wonder what age my kids will gain enough empathy to understand rather than get upset with me for what I can't do for them when I don't feel well. It took their father a few years… he's become more understanding and supportive as time goes on.

    Sorry for the rambling rant! One of those days. Hope everyone else is feeling okay!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  2. #2
    Join Date
    Mar 2014
    Posts
    128
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Endorse yourself Lisa! Even though you were under the weather you were able to plan and execute a few to-do's! I did a gastroendoscopy yesterday for my dysphagia and was still feeling out of it today. I told my youngest to go to a friend today and rested up. Ones gotta do what ones gotta do.
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  3. #3
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    742
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Lisa you know it's safe to rant here. I've certainly been there and can understand the issues with the kids. Since my kids are now ancient I can tell you they still fight. Seriously!!! It's frustrating when you plan your time and something comes along and blasts you out of the water. All you can do is go with the flow. I had to explain to my grand kids that sometimes plans change. I hope the walk helped and if the massage is helping with the headaches I feel fairly confident that it is muscular in nature. Hope you have a quiet, blissful evening.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had bad headaches at the beginning of my most serious bout with WG, around the time of dx. No one really paid much attention to them. As soon as I got on treatment, they started to ease up and they haven't been back. I hope that is the case with you, that it is early in the game and these will pass, whether they are from tension, inflammation, or whatever. I know everyone is different and others are still dealing with a lot of pain, which I'm not, and for which I'm thankful. I don't know what I'd do with a houseful of kids and WG at the same time. Hard to imagine. Hang in there, things will get better, it may be a little too early to feel like you should be in remission.
    Anne, dx'ed April 2011

  5. #5
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    I've dealt with pain for so long that I've learned to manage it and work with it and through it... Not that I can endure any level of pain, but I've become adept at forging ahead until I can't any more... It's just when pain is new or different and could be a sign of another insidious symptom that I worry about it, and the headache/ jaw ache / neck ache / ear pain reaches the level that it is actually debilitating. I think I thought I was superwoman and could keep going through any amount of pain. Sometimes (lately, too often), the headaches stop me in my tracks. I figure there is a reason for everything and this is another part of the lessons I am meant to learn in this life. Letting go... Being gentler and more kind to myself... Leaving the to-do list (again) for another day, the world will not end if I don't get my daughter the right colour of crocs for camp on Monday instead of Tuesday or Wednesday and I don't need to feel guilty about it. I'm really trying to go with the flow and see these days as an opportunity to shift gears and do what I need to do to take care of myself. That does seem to help, and could be part of the reason yesterday got better. I ended up having a decent afternoon and a good evening.

    Thanks all for your kind words and support!
    Last edited by LisaT; 06-10-2014 at 11:57 PM. Reason: Typos
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #6
    Join Date
    Apr 2010
    Posts
    909
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    All you can do is all you can do . I really feel for you situation. I have had to make massive adjustments to what I expect from myself. Other people- unfortunately some are able to adjust and others have just given up and moved on. I have to accept that too. I am still who I am - some people will know that , others will not.
    WG is sort like a hoe in some ways that is weeding out people from my life.
    You need someone to help you get to the bottom of what is causing your headaches. Many here have had this as WG symptoms- including myself. I have suffered in agony for months. And now, I have no headaches. So, you can look forward to getting treatment that will help you- whatever the cause. Someday you will not have headaches- find the path...

  7. #7
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I agree, your headaches sound painful and debilitating enough that they need to be investigated further... With all the stress in your life it seems possible that any pain at all will be magnified a few times, so we will hope that is all it is and that it will pass. Quite a few on here have gone ahead and gotten MRIs or whatever and it turned out to be nothing serious.
    Anne, dx'ed April 2011

  8. #8
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    I am reading your thread only now, so I hope that you have back some spoons
    as for the kids, it is perfectly ok to let them know, that their mother is also human being, is aching, has her needs for rest, needs them to help and be considerate etc.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •