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So I believe I’ve had ME for about two years but I’ve only been diagnosed about a month.
I intermittent from my university course as a photographer in October ‘17 and withdrew permenanrlt after my diagnosis ..
I went from living alone, to living with friends and then living back with my parents .. I’ve always been a really independent person and worked from the minute I left school.. always paid my way and did all I could in that sense. So you can understand my frustration now I’m without education and without my job.. and without income period 😫 I’m drowning (with lack of independence) I can’t (as of yet) work, or study or be on the go as much as I used to be .. so what CAN I do to boost my spirit and feel a little less useless?😅🤷🏻??? I just want to be working again .. or find something I can aim towards 😏😏
Many thanks for all advice
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You could look for a distance learning course that can be completed online to help build your sense of independence back up. I know it takes energy to just look for a course so, plan your search so you don't make yourself feel worse.
Setting goals is best way i know you want to get back to what you was doing before but if you are suffering that much that is unrealistic at this stage so just set small goals and move up that way if you set goals too far ahead all it will do it make things worse.
I have seen lots of patients who are pushing too much wanting what they had before becoming ill so they end up in a pattern of doing something then crashing this is for both physical and mental.
I hear what you are saying and the sadness of not being able to continue with photography at this point. I was enrolled on a university course when my condition hit.
Do not give up hope. In relation to studying by distance learning, you could look for a course that is related to your chosen career path or something totally different that still gains your interest. Open university offer some free courses such as maths. They are modular and you do them at your own pace. They may seem much less than a university course but, See it as a step towards independence. My daughter has a friend who has had cfs/me since childhood. She recently got married and managed this by planning for breaks during the day. She has had to plan her whole life to get to where she wants to be in her life and has managed to get through so much including schooling. I also have a friend whose partner had cfs/me for 10 years and was bedbound for some of that. He was and still is a keen cyclist and has his own personal fitness company. He cycles again now and i believe had to have felt that wouldn't be possible at the beginning.
It's a very difficult condition to live with and readjust to. It knocks confidence and self esteem and it's like you have to reinvent the wheel on a daily basis! Resting and Pacing does help as well as eating as well as you can. Currently I'm taking an iron supplement called Feroglobin and calcium and magnesium. Not everyday because, i have memory loss still but, most days. It's been about a month now. It claims To help with tiredness and fatigue which is why I'm giving it a shot. It also contains b vitamins and minerals.
I'm looking at doing a distance learning course in the coming academic year. My philosophy is to just see how far i get. If i get ill and have to take time out, then so be it. If i can't complete the course, at least i had a go and can come back later.
About 2 years ago, there was a free first aid course being offered near my home. I decided to take it and the 1st one was a couple of hours. I was the usual spaced out with some pain but i got a certificate at the end and was glad I'd tried. I had to rest afterwards of course but, worth it. The next part was longer and i thought I'd be ok. It was awful, i felt so ill and just couldn't perform CPR nearly collapsing myself. My head hurt and it took days to recover. The tutor was fine and stated in an emergency, i could instruct someone else to carry it out as I'd managed it on the 1st course. Why I'm telling you this is that things are possible. Just keep hope alive and be gentle with yourself.
You have a period ahead of you where you have to find new interests, new ways. And hopefully some sort of pension. The first step is the hardest - letting go..
But there are new ways after that.
I completely understand your frustrations. After reading your post - and thinking about your current position - I have split your 'needs/frustrations' into 2 parts: people, and activity.
I would strongly advise not to think of losing the help, support, and encouragement of those around you. Those that may understand all you are going through may be few in number.......if your condition continues as it is, or even gets worse, then these people may be invaluable. As far as activity (career/job) goes, only you know what your body is capable of. I do understand just how much we all need to feel a sense of belonging. However, that sense needs to be suitably balanced by the limitations you suffer on one of your worst days - you don't know when they will hit/occur. Yes, I know this may be easy for me to say because my sense of belonging is enhanced by the growing (voluntary) admin style work that my church is asking me to do (sitting at my computer - at home - compiling information for church activities, and helping produce a periodical publication...........around my frequent sessions of brain-fog, and regular times of lethargy and issues with concentration --- combined with my sleep problems this means that I can be found doing this in the small hours of the morning, included in the 'pacing' that my occupational therapist has trained me in). This is balanced against the fact that I have not been able to do paid work for over 13 years. Make the most of doing what you can when you can. If you've only been diagnosed for a month then it is very early days. It does go away. Don't let your mind write cheques that your body can't cash!
It's incredibly hard coming to terms with it all - the hardest part for me so far is coming to terms with the tag of being 'disabled'.
Remember: None of us asked to have these issues, and there is life even with ME. There's no shame to having ME, and the ignorance of others' is their problem that we can help fix. Good luck with whatever you do but look after yourself.
Hi Meg, what about free lance photography , frame them up and sell at your very own market stall, make them a reasonable price , getting out and talking with others in such an atmosphere helps I reckon! <3 Guava
I am struggling with this also, and I have 2 young children. My husband is also chronically ill so we've been struggling for years. My dad (my mom's gone) thinks we should move in with him in another country. I don't like this arrangement because I know we would lose a lot of freedom to make our own decisions. (those who have money make the decisions, am I right?
It has taken time and a lot of help from family and friends, but somehow we're still able to have our own place to live. And now, we're trying to make a living by starting our own businesses. When you're your own boss it's much easier to cater to your needs.
If you're into photography, perhaps you can try to make some money doing that? Maybe sell prints of your work? That way you don't have to answer to tight deadlines. It is also possible to sell automatically.
Nowadays there's a lot of possibilities when making money online. You don't necessarily have to have a degree in what you want to do. A lot of what you learn in school can be learned online. I never went to college level art school. I learned a lot from Youtube. Right now I am early in the business of selling my art on Etsy and taking commissions for pet portraits. I share my art on Facebook and DeviantArt to gain audience. Everything is done online and on my schedule. If I get sick or tired I just rest until I can draw again. My business is progressing slower than I want, but I feel fulfilled doing something I love and am good at.
I know this is hard. I feel it every day. But it is possible to find what you're looking for. If I can help in any way please don't hesitate to message me.
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