Monday, May 10, 2010

Alone (aaawww, so sad)

I'm back online (thank God). I have been offline for a over week because I was changing ISP's. I still only have a temporary connection with minimal downloads but all should be back to normal in another week. I really do feel like I am back from the dead hahaha!

It's been a really odd week for me. I have felt extremely isolated. Aside from no internet my friend Michael who along with Mum and Dad is my major support was away on holiday. I went most of the week without seeing, talking to or even texting another human being, and it wasn't nice. I realized just how dependant I now am on others. If I run out of bread or milk I can't even get some without phoning for help. I also realized that I have been getting through this just be keeping my mind to busy to notice how shitty it really is. Without internet and people to communicate with I struggled to keep busy. Some days I am just too sick to read for hours or even watch TV. I spent a lot of time just sitting or laying around thinkng ... really BAD idea!! All I could think about was what will become of me. Like I said my main support is really Michael and Mum and Dad, and all 3 have health issue etc of their own. All my other friends except one haven't made any attempt since Xmas to see me. I feel disappointed and let down but sadly not surprised. I do understand how busy life is for people but I also know that in the past when someone has really needed a hand I have made time to be a friend.

So .... what will become of me? I do feel envious of those of you who have partners and families, it must be nice to feel safe. I even thing about how nice it would be to just have a little cuddle once in a while.

OMG .... what a sad and pathetic post this is hahaha. I should say that now that my internet is back on I CAN distract myself and I do feel less alone!!! YIPPEEE!! hahaha

Oh on a serious note, what are everyones views on things like stem cell treatment??


  1. I hear you, Lee. I sometimes go for long periods of time with little social interaction other than online. I can't imagine how chronically ill people managed before the internet! It's just so isolating.

    Instead of letting it get you down, though, just be thankful that we have this wonderful virtual world filled with people just like us who completely understand what we're going through!! We can interact with each other even when we're too sick to get up off the couch - I just love this caring and supportive community we have online!

    Glad to have you back among us -


  2. It's lovely to have you back. I think I would become quite anxious without my online connections, it must have been really difficult. Thankfully you weren't 'out there' for too long. No, not a pathetic post, just you being real.

    For me I'd be very wary of trying stem cell treatment without seeing the results of lots of trials. Personally I've decided not to go down the road of trying different treatments as I know I can see results with pacing and resting. It seems unwise to stress my body by getting it to process lots of different stuff. Not to mention the raised and dashed hopes every time. But I wish you well if you decide to give it a try.

    Ha, the code for posting my comment was 'illessno'. Bizarre.

  3. Well whilst you've been missing us we've been missing you. I look forward to your irreverant posts and little jokes on FB. Only yesterday I was having a trawl through your FB photos and catching up on your 80s memories. Glad I'm not the only one who has a few 80s skeletons in the was so easy to get through a whole can of hairspray in a day or two back then ;o)and then go out to be heckled and joshed about your funny clothes.

    I do feel for you being alone and I'm afraid the lack of support from 'friends' just seems to be par for the course. I too was always the one who was there for people but when I needed them most they were gone. I was terribly hurt at the time (10 years ago) but now I'm just resigned to it and feel like I have good friends here in Blogland.

    Personally I agree with Jo re. stem cell: it's too dicey and I still don't believe that there is real knowledge about what having the M.E. label means. I still think that that label covers all sorts of conditions --- so some treatments will work for some people and some won't because the treatments aren't being used on the same illnesses. I have tried many alternative approaches and by and large, pacing, diet and Reiki help me. Think the Reiki is good because of the relaxation aspect.

    Take great care and know that we are always here. You're a treasure....look I've just got you this 99 from Rossi's down on the seafront ;O) Want some sauce with that ?

    (PS Do you remember when Rossis did those cornets with a lolly stuck in them and their lollies were wrapped in kind of greaseproof paper ?) LOL

  4. Lee Lee:

    I have greatly missed you and am so thrilled to see that you are back online. I'm sorry it's been such a difficult time for you. My friends have already drifted away to carry on with their lives and I am grateful for the (supportive) family I have around me, I am so sorry that your support was gone away all at once, that must have been very difficult to deal with. I'm glad your back here - surrounded by friends that understand. Whine all you need (I certainly do - LOL).

    Regarding the stem cell question: I tend to be a bit more open minded, I work in the medical research field and am surrounded by things that I never thought would be possible. However, I am afraid that this may be something else, to raise our hopes only to find out that it is of no use or could even cause additional complications. I'm interested by the research, but would like to see MUCH more done first. Also, I also think that the first and main focus has to be to understand this syndrome more before anyone can truly come up with a viable solution or treatment. What are your thoughts?

  5. Welcome back, Lee Lee. We did indeed miss you. My personal opinion regarding stem cell therapy is that we are seeing a huge increase in attention and research into this disease right now. We may be on the verge of discovering something significant. I'd rather wait to see what comes of it. If there's a break through, I'd rather follow the science. Stem cell therapy could still be something I'd consider in the future if everything comes to a dead end.

    Check out Alison at Blog Wormwood. She's talked a lot about this topic and is in the middle of trying to decide whether or not to try it.

  6. Great to see you back! My partner who also has CFS was without a computer for a several weeks, and since I was tired with appointments and bloodwork, he went for long stretches without seeing anyone. We only live six blocks apart but often times that's a long way! I really can't imagine how isolated we would all be without the internet. Wish we could come by and give you a hug! I wonder if there's some other community services that would be helpful for you... for example, in a larger city near here, there's a support network for older gay women, who are less likely to have 'conventional' support networks than other people. I'm afraid of ending up alone some day too, since my partner and most of my friends are quite a bit older than me, as are my siblings. Since my illness came on more gradually, my less supportive friends got weeded out over time, though I still rarely see my close friends who live in other cities. I hope there will be some non-strenuous ways to create support networks in your non-virtual world. Meanwhile, we're here in the interwebs.

    I'm pretty cautious on the stem cells, too. It sounds like some folks on the weblogs and phoenix rising are going for it later on in the year. I'll be interested to see how these brave folks do. I'm seeing what I can do with adrenal support and thyroid. I really feel better the last few days since I started 7 keto DHEA. I have better exercise tolerance and less weakness or shortness of breath. Still haven't melted the mind fog icecube but it feels good to be able to move more. Maybe your doctor would be receptive to your trying 7 keto?

    Take care!

  7. Thanks everyone for the big welcome back etc :-)

    Regarding stem cell, it's not something I am considering either but it is something that I am hugely curious about. I have noticed a few people are it taking seriously and coughing up the huge $$$ to give it a go. Personally, at this stage I am not prepared to try anything radical in case it makes me worse! Even deciding on a non radical approach is a minefield, so many options. My Dr is going to try me on D-Rebose which has an effect on your bodies ATP, which seems like a logical and straight forward approach. I also saw something in a catalogue the other day which is a recharger for cell phones etc. The add said that it can re charge ANYTHING! haha so I thought I might try plug myself in for while and see what happens hehe!

  8. Yep, when I lost my friends after getting CFIDS (twelve years ago), I have been afraid to try to make new ones for fear they too will reject me when I have to regularly cancel dates, etc. And now that my girls are teens, it is even more isolating and lonely around here than ever! (Those with teens will understand! They 'leave you' emotionally!)

    I hope you will check out my blog sometime, Lee. Especially the latest post. See the Let Your Voice Be Heard Through Virtual Lobby Day 2010 link I posted!


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