tag:blogger.com,1999:blog-22576999.post2533409983087460069..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Grieving Losses and Moving On…AgainSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-22576999.post-5686730935817589352012-08-05T10:50:28.791-04:002012-08-05T10:50:28.791-04:00Sue,
My heart goes out to you and your family. Ma...Sue,<br /><br />My heart goes out to you and your family. Matt is 21 and has not completed even his Sophomore year of high school and the range of feelings about that you can well imagine. (He did the part-time, home bound, etc. until getting C-Difficile, an antibiotic resistant infection in the hospital while have his appendix removed.) His brain fog after that declined to a degree that we had to pull him out. <br /><br />What I was feeling though, reading your words is just how lucky Jamie is to have such practical and emotional support from both of his parents. That is irreplaceable and something Matt does not have. His father's attitude is if he's not going to get better, he just needs to suck it up and get on with life...and that's a direct quote. Another example: since Dr. Klimas has not gotten Matt better in a year she's obviously doesn't understand this illness and is running bogus tests, etc....could go on with a list, but you get my point. My heart breaks for Matt to have to endure that on top of being so ill, and for me, it is just so exhausting to figure it all out myself. <br /><br />Working as a team like you do has strength beyond measure, but those kind of days are tough as we all very well know.Your positive determination will prevail, I am certain!Diane Claghornnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-37043304640667532332012-08-03T17:56:29.975-04:002012-08-03T17:56:29.975-04:00The only way out is through, and you describe the ...The only way out is through, and you describe the process so eloquently. You are equipping Jamie to navigate these waters as he matures to an adult - what a gift to him! I hope that the right option becomes apparent soon, and that the administration gets with the program! No parking accommodations - are you kidding me?!Jennie Spotilahttp://www.occupycfs.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89708459575895718332012-08-03T11:26:04.992-04:002012-08-03T11:26:04.992-04:00Great, Beau!! Hope is so incredibly important. W...Great, Beau!! Hope is so incredibly important. We reallt are content with our lives and happy most of the time - Jamie has just been through a particularly bad time this year with the addition of the 3 tick infections, and this is a big time of transition in his life.<br /><br />I truly believe there is hope for all of us, individually and as a patient group.<br /><br />Hang in there...and believe!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-65397033118284250272012-08-03T11:24:09.725-04:002012-08-03T11:24:09.725-04:00Thank you for the kind words and support, Toni. Y...Thank you for the kind words and support, Toni. Your last paragraph really helped. We are feeling like this is such a big decision, but the truth is that whatever we decide will work out fine. We just need to help Jamie see that. Thanks, as always, for your caring and support.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-32252855232353036522012-08-03T11:22:37.859-04:002012-08-03T11:22:37.859-04:00Thank you for sharing your own story, Lee. It is ...Thank you for sharing your own story, Lee. It is really incredibly helpful to hear from others who've been through this stage of life with CFS.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-87689913534247562852012-08-03T11:21:52.332-04:002012-08-03T11:21:52.332-04:00Thanks, Heather.Thanks, Heather.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-45970146134087235032012-08-03T11:06:23.967-04:002012-08-03T11:06:23.967-04:00Tears in my eyes all through reading this. It mus...Tears in my eyes all through reading this. It must be so so hard for Jamie to make this decision. As you know, I've done part-time graduate studies mostly from home and I have been lucky with my accommodations. That being said, I only did one course at a time and a few of them were even online. <br /><br />Last summer I had to go to a seminar and even with accommodations I have spent most of the year in bed since. I think a combination of the travel, living away from home for 4 weeks added up to a relapse even though I attended very little of the course in the end.....so, while it's a hard decision to make (being left behind), getting sicker is also not worth it (and I can say that from where I lay now). I know that we are all different. Obviously you and Jamie will make the best possible decision for him.<br /><br />To me, it sounds like the university is not as accommodating as some. I hope that something comes round for Jamie....all my well wishes headed your way. It sounds like he couldn't have better, more supportive parents.upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-61893446847819800512012-08-03T05:44:52.548-04:002012-08-03T05:44:52.548-04:00I have had CFS for two years now, and I am only 19...I have had CFS for two years now, and I am only 19, the last paragraph of your blog gave me hope (L)Anonymoushttps://www.blogger.com/profile/01994060609655720443noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56648480181151757402012-08-02T23:32:02.086-04:002012-08-02T23:32:02.086-04:00Oh Sue. I'm behind on my reading and just read...Oh Sue. I'm behind on my reading and just read this, crying almost all the way. Either things have changed drastically since I was in academia (before I got sick -- 10+ years ago) OR Delaware is not as accommodating as California (California has its own state disability law which gives more protection than the ADA).<br /><br />You should not have been treated as you were. And it sounds like it is THEY not you who don't have their act together -- telling you that accommodations for housing should have been done in April but without giving you notice.<br /><br />All I can say is that you and Ken each get an A+ as parents -- Ken staying home and continuing to investigate, make phone calls, etc; both of you joining Jamie in his frustration and grief instead of trying to pretend that everything went well. This helped him work through it in the best way possible.<br /><br />He is so fortunate to have you and Ken as parents. You're always there for him, no small feat given your own illness. <br /><br />I just love you and your family Sue and I hope that by taking your time and continuing to weigh the options, the right decision will become clear to you in the days to come.<br /><br />ToniTonihttps://www.blogger.com/profile/05729837575450453607noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-10027921555499321332012-08-02T23:07:14.927-04:002012-08-02T23:07:14.927-04:00My heart goes out to your family, too. I was in co...My heart goes out to your family, too. I was in college when I started getting sick, and I think it's one of the most stressful environments to be in. I wish now that I had had the courage and foresight to go back home and not attempt to keep up with the "kids my age" and the Herculean energy. It takes a lot of strength to go to school and move on with your life despite CFS, but it takes a lot of courage and strength to go slowly and take care of yourself, too. Guess we're just cursed to be brave and strong no matter what we do. Whatever you and your son decide, it sounds like he has a supportive and loving family, which is the most important thing there is.Leehttps://www.blogger.com/profile/07598902383588588136noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-49834353052775337042012-08-02T20:52:29.680-04:002012-08-02T20:52:29.680-04:00my heart is breaking for your family - its hard en...my heart is breaking for your family - its hard enough to deal with this illness when it hits in your 30's or whenever...but to hit as a child - tell him how much love is being sent his way...hkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4852304968941862402012-08-02T20:42:31.309-04:002012-08-02T20:42:31.309-04:00Oh, Char, I had no idea you'd been going throu...Oh, Char, I had no idea you'd been going through that!!! I'm so sorry to hear that. I was sorely tempted to jump in on Jamie's behalf yesterday because he was so badly crashed. I think his normally invisible illness was very obvious to the Disability person.<br /><br />Thanks for the kind thoughts, Char - hope and prayers going out to you guys, too. We WILL get through this and things WILL get better!!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48560387098917410622012-08-02T20:39:05.849-04:002012-08-02T20:39:05.849-04:00I really appreciate the voice of experience from s...I really appreciate the voice of experience from someone who has recently been through this himself. We keep telling our son there are lots of different options now that he has finished high school. Thanks for sharing your own story.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56973951618046165642012-08-02T20:37:58.893-04:002012-08-02T20:37:58.893-04:00Thanks, Lee Lee...you are sweet to be thinking of ...Thanks, Lee Lee...you are sweet to be thinking of us with so much on your own plate. xoxoSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34919004633945086472012-08-02T20:37:26.654-04:002012-08-02T20:37:26.654-04:00Oh, my gosh, yes, of course, I remember you! So s...Oh, my gosh, yes, of course, I remember you! So sorry to hear you experienced a relapse, but it's wonderful news that you are back on track now and recovered again.<br /><br />Very wise words about the advantage of hindsight. We keep explaining to Jamie that college (and everything else after high school) is totally different than high school, that there are a million different options, and that plenty of kids who aren't even sick will take time off for various reasons.<br /><br />Thanks for sharing your story...and best of luck to you as a med student!!!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-31142798119526719052012-08-02T20:34:12.249-04:002012-08-02T20:34:12.249-04:00Thanks - we are sort of in limbo now, waiting to m...Thanks - we are sort of in limbo now, waiting to meet with the Dean and to see how Jamie is feeling in a week or two. I appreciate the kind thoughts.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68308357913193052902012-08-02T20:33:02.647-04:002012-08-02T20:33:02.647-04:00Thanks for the wonderfully supportive words! And ...Thanks for the wonderfully supportive words! And we take our hats off here, too :)Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-54244567534163227622012-08-02T20:30:28.952-04:002012-08-02T20:30:28.952-04:00Thank you for the very kind words, Renee. We are ...Thank you for the very kind words, Renee. We are all feeling stronger today.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-40312305912571796762012-08-02T20:27:28.631-04:002012-08-02T20:27:28.631-04:00Thanks, Elaine. I can't imagine going thru th...Thanks, Elaine. I can't imagine going thru this as a kid, either. Childhood (and young adulthood) are supposed to be times of freedom and feeling carefree!<br /><br />Thanks for the kind thoughts and prayers - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80892493318349646302012-08-02T20:15:03.271-04:002012-08-02T20:15:03.271-04:00Dear Sue and family, I too weep and understand as ...Dear Sue and family, I too weep and understand as I read your post. A month ago we sat infront of a very stoic Dean of Students with Disabilities and tried to explain what our daughter would need to attempt college. It was loudly inferred that I wasn't a "helicopter" parent but a "fighter jet" parent. But Aubrey was having a tough day and I was trying to explain CFS and hold my composure as the Dean flatly refused the documents I had brought for her education. We are waiting to find out if she will get a single nearby to classes and we wait with fragile patience to see if she can pull out of her current crash to even attempt it. The true jet fighter pilots are our children who brave great obstacles and misperceptions to try to create a life. I send hope and prayers that our families can hold together like gorilla glue. May the love that is shared be enough fuel in their engines to pilot into a bright future. Peace, CharmagneCharhttps://www.blogger.com/profile/09786274543942041822noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4096680516470505422012-08-02T19:39:57.055-04:002012-08-02T19:39:57.055-04:00As a young male with CFS who went through college ...As a young male with CFS who went through college a few years ago, here are my thoughts. One, in hindsight, I very much wish I had attended a local community college for the first two years, then, if feeling up to, transferred to a regular university. This way it does not put a big financial strain on the family (even in-state universities are crazy expensive these days!) and the pressure and stress is lessened for all involved. And frankly, at this point, I don't see much point in going to college. Yes, the experience is one of a kind, but the education can be gotten easily on one's own now thanks to the internet, online classes, etc. If you were a "healthy" person who happened to wake up everyday with the flu, would you try to go to university? Of course not. So why would you try with CFS? I just think that because CFS is not an illness taken seriously by the medical community that as patients we therefore don't cut ourselves any slack, and that's not right. As Dr. Klimas has said, many CFS patients are as sick as late-stage AIDS patients. <br /><br />Sorry if this was rambling, just trying to get thoughts out.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19181056068853799512012-08-02T19:32:10.617-04:002012-08-02T19:32:10.617-04:00Ugh! Sue I am in tears just reading this. I am so ...Ugh! Sue I am in tears just reading this. I am so sorry for you, your son and the rest of your family. There is NOTHING kind about this illness.<br /><br />Stay strong. xxLee Leehttps://www.blogger.com/profile/02614823402670740413noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14130757829713302062012-08-02T17:49:42.117-04:002012-08-02T17:49:42.117-04:00I don't know if this will help, but...
I wrot...I don't know if this will help, but...<br /><br />I wrote to you a few years ago as a medical student who had come down with CFS after having mono. At the time that I wrote, I thought I was completely recovered - but this turned out not to be the case. I ended up withdrawing from school and taking a couple of years off...and they were not fun years. But I spent the time slowly working on improving my (re) application to medical school and also just resting and focusing completely on my health, with no other responsibilities or distractions.<br /><br />Now I'm starting as a first year medical student in two weeks, and I feel very ready. I consider myself recovered. Sure, I have a symptom here or there, insomnia or whatever, but I spent the summer hiking in the desert and running almost every day, so I'll take it!<br /><br />I guess my point is that delaying school a little while doesn't mean it won't ever happen. It feels devastating at the time, but it really isn't in the grand scheme of things. And the time with no responsibilities was very valuable for me - it gave me lots of time to focus on what was working and what wasn't, with no distractions. <br /><br />Hope this helps, even if it is a tiny bit.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1753761106733291752012-08-02T16:26:03.542-04:002012-08-02T16:26:03.542-04:00This post definitely brought tears to my eyes. I&#...This post definitely brought tears to my eyes. I'm so sorry your family has to deal with this. You seem like such a close family and loving and involved parents. I'm praying that the right situation will come out of all this for Jamie, something that he can both handle physically and accept emotionally.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-3568164689142522002012-08-02T13:54:26.544-04:002012-08-02T13:54:26.544-04:00Wiping the tears away as I write, Sue, I have shar...Wiping the tears away as I write, Sue, I have shared the pain of loss with my daughter on so many occasions and my heart goes out to you all. So sorry you guys were confronted with so much in one meeting and poor Jamie having to come face to face with all of that as well. At least you were all there together to help each other afterwards. So brave of you all to pick yourselves up straight afterwards and start planning anew. I take my hat off to Ken (another quaint British phrase!) for climbing back on that horse (and another one!) and getting that vital information while you and Jamie tried to assimilate what had happened. Your family unit is a strong and supportive one which will see all of you through these difficult times. I hope that something good will be forged from this for Jamie academically. Love to you all from all of us.xxxxxxxpatienceisavirtuehttps://www.blogger.com/profile/17464641455680803283noreply@blogger.com