Video

Keep posting. Watching from a country known as Kenya

I wish you all the best for 2020, I have M.E and other illnesses and dealt with similiar life experiences, what I've learnt in 5 yrs dealing with myalgic encephalomyelitis is you have to rest and rest some more. But!! You also have to find something funny to make you laugh. Laughter is always the best medicine. I recommend body groove it's very light dance. Can do it sitting down, sway to music. Find the sunshine in everything you do. Even if you just find something that makes you smile a few moments and build on it each day. We all have our down days but don't let them own you. Check out also Marissa Peer videos. She gives excellent talks on subjects like "I'm enough". And I truly believe I am. So are you. Accept the past has gone, find new joy in the life you have now, even with illness. I am riddled in illness but I can't change the past. Rest when you can, rest and keep smiling.

Thank you for the video. A lot of us are frightened by the growing extent of cardiovascular and muscular degeneration in parallel to unceasing M.E.. I applaud you for tackling steps to establish any kind of exercise routine. Even attempting if not succeeding is healthier for the mind. I've Shared your video with some online friends who have M.E.

I was wondering also if there are times of year when you'll typically feel worse, and if specific symptoms only occur in winter, for example.

I think you're faring very well so far. Once you get any project running long enough it picks up it's own steam and becomes is own entity. Once you get the hang of it, as you have very nearly, it will create a gravity that will begin to pull others to it and some of them will bring more viewers.

I've had CrohnsColitis since 1995. Had four operations. It caused my appendix to become gangrenous, so lots of fun and games ever since. I've had days where I'm passing huge quantities of wind once a minute all day. Vomited so violently my intestines felt they were bulging out of my mouth. Unexpected bouts of early morning incontinence in bed, so all the bedding has to be waterproofed. It's unbelievable, but it happens. Among the most socially-excluding diseases.

Great vids, keep up the good work! You should use smzeus . c o m to get more social proof.

My mum had endometriosis and my sister has symptoms possibly preceding it. As was discussed by Matthew in this thread, its dreadful that society will pretend the suffering of others doesn't exist or matter, as if by taking about it they will somehow contract it ... which is the inane pathology of taboo. If everybody was educated to accept illness is a normal part of life it would (A) create universal sympathy and anxiety reduction and (B) massively, massively increase medical funding into the cure of all diseases and disabilities, instead of very poor quality lives where all pleasure is filtered-out by the intensity of personal suffering. So we must all keep these matters in wider circulation.

Sure many will jump to the immediate conclusion, that as a man I shouldn't comment on this, but my ex has suffered for many years with Endometriosis. One of those conditions that most men aren't comfortable discussing, and unaffected women, especially female GPs, can be even more cruel, dismissing through false comparison, as being overly sensitive, to regular period pains that they suffer. Nobody should have to sugar coat their words, but if discussion focused on the internal abdominal scar tissue and adhesions that bind many internal organs and structures, it may be easier for both genders to discuss, sympathise and understand logically. My ex was diagnosed during her first laparoscopy back in 2007, but had almost given up on her GP. Ironically, it was me that pushed for her GP to refer, for investigation of possible Endo, despite still being on a very long path to my own ME diagnosis.

Takes real guts to do what you are doing, and those with ME like myself know exactly where you are coming from. Of course everyone with ME suffers a level of mental torture, but the difference between circumstantial and clinical depression, needs to be recognised. I've had periods of deep depression, but that is a natural emotion, when living with an unrecognised disability, leading to events, such as eviction, beyond personal control. It took me over 17, of what should have been my best years of my life, to finally be taken seriously and get a diagnosis. Mine started in February 1996 with Glandular Fever, that was an unexpected 21st birthday gift. At that point, I'd been in full time employment for 5 years, plus bar work evenings and weekends for 3 years. I'd not taken a single days sickness in all that time, until getting Glandular Fever and was signed off for just 7 days. After 7 days I went back to the GP to be told, "the symptoms you describe can go on for months, and you must return to work some time". She gave me another 4 days, before I was back in doing around 70 hours a week. Something inside had changed with that infection, and I never truly recovered from it. Initially my GP gave lectures about using the gym to release endorphins, etc, so I changed GP. My new GP listened at first, running multiple blood tests, but with those clear, drew the conclusion I must be depressed. Didn't seem to matter that I knew I wasn't, as in his eyes, the bloods don't lie. Time and time again I'd push for further investigation, but after so long it's like banging your head against a brick wall. For many years I just gave up even trying, as GP visits just took energy I didn't have, for no gain. For many years I could only work part time and then I started my own business, to work around my own limited capabilities. The latter half of 2012 even that was proving too much for me and I went through a load more tests, to be told all clear. In January 2013 I finally, as a grown man, balled my eyes own hysterically to my GP, as I finally had to quit the self employment I'd spent 4 years building up successfully, and finally was referred to King's Collage, London. Finally some recognition I thought, only to realise they treated it only as if it was a mental health condition. It was only just last year, that I finally got into the ESA support group! Now I'm all up for talking about the effects of ME on mental health, but I wouldn't want non-sufferers and medics, to get the wrong impression about ME. It is PHYSICAL, but understandably the frustration and lack of life control, will lead to depression. Depression can be clinical or circumstantial, and when circumstantial is part of the normal range of emotions. Thanks very much for your videos, and please don't let anything I've said be taken the wrong way, to put you off.

Yes I get many but not all these symptoms. I can’t drink alcohol. It gives me stomach cramps and makes me feel really nauseous. I agree re the new symptoms about waiting it out and trying to work out if it’s the ME. But I have been caught out a couple of times. Sort of. I thought it was the ME and it wasn’t. I suffered from really bad nausea. After many trips to the gp and trying various things he referred me to a gastroenterologist who arranged for me to have an upper endoscopy turns out I had (I can’t remember the proper name but quite bad inflammation in the duodenum). I was given medication that day and after a while the nausea went away. I can’t really remember what they said as I had been sedated. I do have an appointment to go back and get the results properly but it’s the NHS. I will by the time I go back next April have been waiting over a year between getting the test and seeing the consultant again. It just proves that new symptoms should be taken seriously. I think my gp thought it was linked to the ME as well. It took a very long time for them to refer me. I suffered with it for well over 2 years making multiple visits. I lost a lot of weight. Not that I am complaining about that but it was not pleasant and I felt really awful with it. Like you said in the video if you are not eating you feel even more tired. That on top of the fatigue and tiredness of the ME was not good. But on a positive note I no longer feel nauseous.

Hi Zoe. I am Claire. This is a great idea. I just subbed you and hit the bell so I get notified of new videos. This is a wonderful idea. I have often thought about making a video about CFS/ME but have never done it mainly because that’s not what my channel is about. I have Me/cfs. I like you am not bed bound. I work part time. Sometimes even that is a challenge. I at the moment am on reduced hours as I have been struggling. (I had a cold and it’s well floored me. I am slowly building up my activity levels). It’s so so fantastic to find someone who works but has this condition. The brain fog and work is what I find incredibly challenging. The more tired I get the worse the brain fog. I can get exhausted from being mentally active (If that makes sense. I sit behind a desk at work but have to concentrate and problem solve and that can exhaust me.) anyway I am so sorry for rambling. I think it’s just brilliant to find someone else who struggles in the same way I do and manages to have sort of a life. I guess because we have the same struggles and you will understand the frustrations that I face on a daily basis. I look forward to watching more videos. Take care. Claire xx

looking forward to following you on here. Fellow Spoonie xx

Thanks for your comments! I’m so excited that people are watching!!

Happy to watch your video and look forward to future efforts. Good quality and informative, nicely-spoken.

Well done Zoe, looking forward to following your videos!