Hello again! In my last several posts, I promised a more personal update was in the works. In fact, this update is far overdue, and I want to apologize for that. I especially apologize – deeply – to the individuals who mentioned their concern about whether I was still alive or not. I absolutely do not want to worry anyone unnecessarily, so the end of this post will list a few surefire ways to get an update should concerns arise.
In my last update I spoke of one of my biggest challenges being the matter of keeping solid food down. I had recently gone through a 30+ day period being unable to keep anything down before finally managing a bite or two at a time. This is still very much an issue for me. I still routinely go days or weeks without solid food, often throwing up anything I try to eat. Sometimes I am able to keep portions of a meal replacement shake down, sometimes not. This is related to the issue of gastroparesis which is common amongst ME sufferers. Some patients choose to accept either tube feeding or TPN as a medically assisted means of getting the nutrients they need. I made up my mind long ago not to accept any life prolonging measures, and in my case I feel that includes being tube fed. This sort of thing is a very personal decision, and not something anybody decides lightly. I respect those who choose to utilize tube feeding just as I respect those whose choices mirror my own. In my case, knowing that medical technology is nowhere near being able to repair the type and extent of damage caused by ME, I choose to let this illness play itself out on its own timetable. I have no desire to rush things, but also no desire to prolong the suffering this disease brings every day to me as well as to those who love me.
That said, my family has been amazing throughout everything this illness has caused. As many of you may already know, my husband was forced to quit his job years ago in order to care for me full time. In addition to all the usual tasks a carer would perform for a bedbound family member, for the past three and a half years my husband has been tasked with delivering subcutaneous shots every two hours, around the clock. That means he never sleeps more than two hours at a time. While this has caused him unspeakable exhaustion, he never complains about anything I need. If I ring the bell half an hour after he lays back down in the middle of the night because I start to vomit, he comes and holds my hand, then deals with cleanup – without complaint. If my bowels decide to do their thing at the worst possible time, he takes care of that too – without complaint. When my pain spikes or my nausea is right on the edge or I’m faced with a two day migraine, he says things like, “I’m here for you. Tell me what you need. I’ll do whatever I can. Let me know what I can do.” And he always tells me that he loves me.
I worry about the toll caring for me the way he does must take on my husband. If nothing else, getting up every two hours for three years straight can’t be good for him. But those shots are the only thing keeping me away from level ten pain, which for me is a level of pain where being eaten alive – not just attacked, but literally eaten alive – by bears would actually hurt *less.* And while I do have a subcutaneous port to avoid getting stuck with needles twelve times a day and risking added seizures and infection, we cannot have an automated pump in my current situation because we have no access to in home nurses to maintain it, and insurance wouldn’t cover it anyway. My doctor is amazing for offering me the most helpful treatment he can and being willing to do home visits – no other doctors in my area offer that to any of their patients – but he cannot find a way to get in home nursing covered by my insurance, and we can’t afford the exorbitant cost of hiring them on our own. So my husband does what he has to do. Spouses don’t come much better than him.
Others in my family have also been hugely helpful. My mom stays with me approximately ten hours a week so that my husband can run errands and help teach martial arts in town – a passion of his I’m glad he can continue. My mom does this *on top* of working eighty hours a week to earn enough money to help us make ends meet. My dad also helps us in huge ways every month, especially financially. I know he has sacrificed things to help us out, even though he tries not to let knowledge of those sacrifices slip. My brother has been a tremendous source of love and support for me, and he also has sacrificed to help ensure my needs are met. I also have an aunt and uncle who live in a separate apartment two floors up that not only offer emotional support to myself and my husband, but help in many other ways as well, including filling in (sometimes on very short notice) when hubby needs to slip out and my mom is working. Believe it or not, there are still others I haven’t mentioned here who also help in tremendous ways. I cannot say enough how incredibly grateful I am for all of these individuals. I know from hearing other ME patients’ stories just how lucky I am to have this level of unconditional support from so many different loved ones. While I wish with all my heart this level of support from them wasn’t necessary, I’m grateful beyond words that they’ve offered it as needed.
I’m also incredibly grateful for the support I’ve received online. The sheer number of tweets, comments, etc welcoming me back after my absence was amazing and extremely heartwarming to experience. I wish I could say I’ll be posting more regularly, but these past couple of posts have taken a *lot* out of me. Each one takes a long time to write, and then there is the energy involved in trying to respond to the inevitable questions I receive after each post. I do have a few more posts I’d like to make, but time will tell if they’ll actually appear. I’ll do my best.
I know this update doesn’t contain a lot of new information about me, but that’s severe M.E. This disease takes us to a horrible place – often to the very brink of death – and keeps us there for years. Many M.E. patients have repeated brushes with death, only to return to further months or years of living on the brink. I am no exception. While most of my symptoms have worsened since several years ago, they’re still basically the same symptoms. I wish I could write more, but I’m honestly not sure what to say.
Before I close, I’ll mention the methods promised at the start of this post for getting updates should concerns arise that I’m silent too long. I’ve made several genuine friends through this site, and I hate to leave people hanging. First, let me re-state an important fact I’ve mentioned once before: my mom has all of the login information for this site and has promised to post here when the time comes I’m no longer around. If you haven’t seen a post from her, chances are I’m simply not well enough to post. Also, for those of you on Twitter, I can be found there. My handle is @aroundwthehound. I often go long periods between posts there as well, but I may be able to respond with a brief tweet during times when I’m not up to posting here. Finally, there is my brother, with whom I’m very close. He recently agreed to act as a point of contact for inquiries during times I’m unable to respond myself. His Twitter handle is @filterthesnow. Please don’t overwhelm him with messages (he does have a life of his own), but if you get concerned and I’m not up to responding on Twitter, my brother will certainly know the latest news.
That said, I think it’s time to wrap up here. While I’ve enjoyed getting back in touch with everyone, both here and on Twitter, the past few months working on posts have taken a toll, especially the past week or so of responding to all the responses. You guys are amazing, and I always feel better seeing others who are continuing the important work of educating about this disease – both what it is and what it isn’t. It’s good to know that the neurological disease that’s slowly taking not only my life, but the lives of many others, hasn’t yet been totally forgotten or buried by the erroneous, medically prohibited combination of ME with the variety of yet-undiagnosed conditions known as CFS. There are people out there with shovels – a few even have bulldozers – who work every day to keep awareness of this disease alive, even as more and more who have it die. To them I am incredibly grateful. Keep up the amazing work.
6 thoughts on “An Update For Those Interested”
I’m sending my love your way! What you are going through is hard, you have an amazing family and you are amazing to write about it x x
Many thanks for updating us about your life. My daughters M.E.is deteriorating and I have some concept how much energy it takes to write a blogpost.
Its good to know its possible for M.E. patients to have such a strong support network, its not the case for everyone I know. Hopefully being surrounded by so much love makes the worst days survivable, I would have said easier but I know nothing can do that.
I remember my endless years, it seemed, with very severe ME. Like you, I let my body do its very best with care and support from loved ones. It has done me proud over those years and continues to work on it. I live a modified life with lots of rest built in daily. I send you my love for your own life and we all hope to hear from you for many years to come, when you are able. XXX
Thinking of you and your family, such a difficult time for you all. My M.E fails to exist in comparison to your depth of your suffering…
Always remember God is good and is watching over you all.
God you have suffered so much and my heart goes out to you and all who dedicate their time in caring for you. You are a really lovely person to be so grateful by recognising how others are severely affected by this serious often deadly disease. The medical authorities still downplay the severity of how bad things can get with ME and this is partly why medical help is wholly inadequate for restrictions we end up facing.
THANKS SO MUCH for speaking up about this disease and saying how it really is when to do so requires great courage, tenacity & effort.
I’m now at housebound stage of disease but with absolutely noone to look after me (medical authorities certainly won’t as my records state that I have PTSD & Somatisation Disorder). My son who lives with me needs to work full time and has to cover all our living costs, bills. I get no state benefits at all here in England.
As I’ve no available carers, for me, it’s just a matter of how I must end things and I’m determined not to die in agony on my bed in soiled sheets from slow starvation/thirst and septic shock (yes….ME is pathogenic – we’re not this ill for nothing, are we?).
All my love to you brave soul xxxx
Brooke, I am sorry to say I thought you were no longer ‘with us’ – and unbelievably glad you are. I had to change my email address a long time ago after lots of trouble and just managed to get back to it to check in case a friend had used my old address.
Your strength and the strength and absolute devotion of your husband and family knows no bounds. I cannot start to imagine how bad you feel and how much pain you are in – many of our fellow sufferers are in a great deal of pain, but I suffer nothing compared to you.
I salute your valiance, and that of your husband, family, friends and amazingly devoted doctor.
I should love to share this last email to let others know how bad this illness can be – they give me their understanding and support but my need does not compared with many others – especially you – and I am forever telling them I am one of the lucky ones.
With my love and prayers to you and your family.