Newbie just returned to work

[Chiqihoopini]

Hey guys just went back freelancing over did it with 5 days in a row this week looking forward to a couple days off...decided to start blogging about my condition hopefully share with others what its like to have a chronic illness had it since childhood got diagnosed this year at 35 I'd love to hear your stories too if you want to chat chiqihoopini.wordpress.com/...

[Hidden]

Congratulations at getting back to work. I'll take a look at the blog, thanks.

[Chiqihoopini in reply to Hidden]

Thanks so much Raffs gotta take our wins where we can

[Hidden in reply to Chiqihoopini]

Indeed we we do, mind you that's a solid win in anyones books!

[Hidden]

Hi Chiqihoopini, just read your blog and enjoyed it immensely, much of it very similar to myself, I could really identify with the friend thing and I too had a rip-roaring 20's.

I have to admit I've struggled with having ME and its been made worse by having pretty bad RLS the two exacerbate each other and it gets nasty at times. Thankfully pacing, a tight vitamin and drug regime coupled with yoga and meditation seems to be keeping things on a relatively even keel, (Christmas floored me and I spent much of the big day, St Stephen's and part of the next day in my bed).

The RLS has been an increasing debilitating and indeed embarrassing, I get it in my back and because I am jerking around so much I'd get more around the walls than in the loo. Due to the fact we have a limited time on this planet I'll leave my lamenting on RLS to that, otherwise you'd be in for an awful long read!

I trace the ME back to about 13 years ago although not recognising it as such until about 2-3 years ago, (memory is shot so guessing here). I went into work one night, feeling fine until 11 when things started to feel off. By midnight I was struggling and lay down, sleeping til 7.30 when I got up managed to get home then slept for the better part of 3 months. Things cleared up I got back to work, never shaking the fatigue properly but putting that down to being a parent, work and the RLS.

Roll on a couple of years ago, I was taking on more and more work at work, spending time studying for a degree part-time as well as maintaining my parental responsibilities, (my share of house work, kids homework, etc). I was teaching myself guitar so I could teach it to my eldest. After an operation things went down hill and I struggled to think straight, focus or do much. Most parental responsibility went as I was saving all energy for work. So long story short got diagnosed with ME, lost my job, the course I was on, my self-esteem, hobbies and sanity

So that's me, down, but certainly not out and focused very intently on getting well and if its possible curing myself some how.

Reading your blog it seems that you feel you had fibro for a good portion of your life or am I reading that wrong?

BTW - I used to have immense pain, my whole body ached. I was advised by a Dr specialising in ME to go Gluten and Dairy free. Within a few days the pain had decreased a hell of a lot, (I have other pain issues that it didn't help), my joints that ached some no longer ached, my toes stopped aching altogether and my hands aren't too bad. It might be worth trying, see if it helps!

Take care.

[Chiqihoopini in reply to Hidden]

Hey Raffs thanks for reading my blog. Wow you've had quite the long journey too! Are you evening out after the holidays? they broke me after too... I can't imagine how that goes down with raising kids on top of holidays and M. E.

I've had it since around 8 after bad few infections and rounds of anti biotics but was misdiagnosed a thousand times but sure at least I know what it is now I can stop doing every detox known to man for every ailment I thought I had lol and stop blaming myself for not being able to be a perfectly productive human doing

I had to drop my degree in fitness and had started a hoop dance company but the more active I got the worse everything got. How are you adjusting to dropping everything? I find it knocks my self esteem too - less social interaction doesn't help either.

I work a few freelance shifts but I basically yoga, work, sleep repeat and I have to take something to knock me out like medicinal marijuana which also helps greatly with my legs but I can only take it at night wouldn't be able to go around stoned during day. I think we're similar in that we like to be actively engaged with projects and life so weed is not a best case scenario for me but it works at night.

Those spasms sound really severe. I twitch under my desk but it's bedtime that it really rears up. Have you tried magnesium oil it helps me sometimes and sometimes you know yourself nothing seems to help. Thanks for the Gluten and dairy tip I am off them 90% I just need to kick butter and yoghurt

Do you find your weight affected at all? Mines creeping up with less activity I'm pretty sure I need to cut my food portions to compensate all the down time but what's the fun in that

Take care lovely chatting with you raffs!

[Hidden in reply to Chiqihoopini]

I took quite a battering when I lost everything, (well not my family but, job, education and hobbies all in one go nearly was damn well close to everything), but it took me a while to realise it .

I initially approached my illness with equal measures of denial and thickness - I wasn't sick and to feel better I had to work harder, (Jesus that is so warped logic looking at it now!), so I 'bulled into' as they say and the worse I felt the harder I worked. I was an absolute mess and am amazed now at how I was functioning at all.

When I went sick it wasn't too bad initially as this was a passing thing and I would recover, would have been nice I then went into the boom and bust cycle so was either pushing myself or sleeping; again not facing the reality of the situation. Very hazy time and don't really remember a whole lot about it.

More recently getting my shit together I had more time alert and aware of what was going on and I realised the enormity of what had happened. I lost a career I worked hard to get and progress in and loved, really loved and got much pleasure from. I was at the tail end of a degree during which I had done pretty damn good all things considered.

I realised my days were being spent sleeping between doing bits of light housework I couldn't do any of my hobbies as even the most simple thing like watching a movie took too much out of me or I'd just sleep through it. A couple of paragraphs in a book and I was forgetting what I'd read. I couldn't go anywhere unaccompanied as I would get confused even in familiar places. So that along with the blasts of anxiety that had developed along with the illness resulted in me being depressed.

Now when some people say "I'm depressed" they really mean I'm bored or a bit down but to experience a depressive episode it is something else! I have known many with depression and have a fair handle on it objectively but man, I had no idea how bad it was and I didn't even have it that bad. I am sure many on this particular site will understand the feelings unfortunately.

How and ever! All that negativity dumped, I've gotten better at living and with a strict diet and rest I can be a bit more 'normal'. I've gotten back at some of the hobbies in a lighter way and am determined to get cured - by any means necessary as yer man said.

Weight wise I am like a rake, I can't eat all the goodies that normally put on weight and have gotten to eating one/two meals a day and they're normally quite healthy - meat and salad for example. If it wasn't for the bloody ME I'd be able to exercise me up a six pack in no time

Yeah the Yoga is a good one, I try and do a bit regularly, light a bit of incense and get some calming music on. Trying mindfulness too which is a help and stops me racing on trying to do things, (or even try and think of too much at once which can cause my brain to fry - a bit like in a cheesy movie when the hero tells the murderous robot a paradox and it cannot compute and shuts down ).

Kids can be hard, and that has been difficult too - by the time they're home from school, I'm done for the day and spend the evening dozing. (then am up half the night as I can't sleep properly). They are pretty damn good all things considered and are very understanding, (as is the wife). I don't know how people on their own cope, it has got to be so tough for them.

When you say you freelance what exactly do you do? It must feel great to be working, fair play to you, if I wore a hat I'd doff it :). How are you managing juggling work and health?

[Chiqihoopini in reply to Hidden]

That logic still crosses my mind from time to time if I just push a little bit further... kaboom I feel like there's a grieving process that goes with M.E. and a lot of chronic illness especially for the accomplishments you have to let go of or what you have to miss out on. You appear to have got through with a lot of inner strength, and your story is really inspiring to see how you battled depression on top of everything else too it's no joke.

Oh those day naps are a necessity it's like my brain just powers down so you're kinda forced to relax but you're right it's a pain at night but I'm awake even if I don't nap.

You're reminding me of stuff I find challenging to explain to others like that short circuiting a robot is the perfect analogy lol that's my brain a lot. In work I do graphic design and layout for a newspaper and I feel like I have to engage my brain twice to really pay attention when people talk and sometimes I just nod and hope my brain will assimilate the info if not I ask again which is annoying because I know I'm competent on a good day

That must have felt really scary for you getting confused in places you know. Its great the family have your back. I'm blessed to be back home, initially I was taking care of my mam think it's mutual caring now but I am still hoping to travel again and have my independence back but baby steps first. I backpacked for 4 years.. It would have taken anyone else a year but with fibro I had to stay from 3months to a year in places because I was so sore and fatigued.

The balancing act is a real challenge bit like yourself on the Gluten and dairy free diet and I removed Caffeine and alcohol too just to be extra fun to be around and also refined sugar as much as possible. I juice in the morning and have lunch and dinner but think I may cut back to two myself. I'm enjoying work being around people. I wake up like a truck hit me take my alternative medicine stuff roll onto my yoga mat for an hour, meditate, with the candles and incense too haha good call! Then take more medicine, vitamins and probiotic and juice and go to work come back cover myself in magnesium oil, take some mm and 'try' sleep. The shift is 3-11pm so it suits the painsomnia.

I often feel there must be so many people slipping through the cracks of the health system confused and at their wits end feeling unheard and sick of being sick but not knowing what's wrong with them. I hope more doctors get better at diagnosing people so they can at least get support from advocacy groups and connect with people in the same boat. I hate to think of people suffering this alone but hopefully as more awareness grows that will be less and less.

Have you much support in your area? I joined a chronic pain group they run great workshops and info days here I'm always open to finding new stuff to try myself

[Hidden in reply to Chiqihoopini]

Hi. Things were very frightening in the beginning as I hadn't a clue what was wrong and thought that it was a brain tumour or alzheimer's and with young children I was very worried what would happen. I was working during this time and god knows I was very lucky there were no repercussions due to my health or when I was driving.

There is definitely a grieving process - I have had to grieve the passing of so much. I used to pride myself on my mental acuity, define myself by my career and had a very full life. If I look at today I went to town with my wife, (she drove), we went to one place where I sat and most of the day I've spent dozing feeling wretched since

Add in to that the RLS, (suffering with this more than anything else and has been going on since before I can remember), and chronic pain and there were time when it was all very overwhelming especially since the conditions I have are so poorly understood by society at large or even Drs.

My wife has been my rock and I do not think I could have done it without her. I couldn't have gotten to Dr's appointments, she monitors my medication, food and activity so as to keep me right. Looking for benefits I had no hope of filling in the forms. How hte hell do people on their own cope? It must be terrible, between not being understood and trying to do all on their own has got to be very tough, thankfully sites like this offer support and knowledge.

I joined a pain group but I was miles ahead of them in understanding what was going on and how to approach it. Most were middle aged women who were fully in the sick role and unwilliing/unable to tackle it properly, (in my opinion). Add to that the fact that it was hard to get to as I had to drive and most of the time I was not willing to take that risk. I find I get all the support I need from the Mrs and here.

I used to use cannabis but when I got ill I stopped in case that was doing anything but then things got worse! I unfortunately cannot get access to it any more as the inept and corrupt politicians make too much money and gain too much support from keeping cannabis illegal. I would have had to give up work a few years ago due to pain and RLS if it were not for the cannabis giving relief and letting me rest/sleep. I am hoping when the kids grow to move to Spain where cannabis is more accepted, (although still no legal). Mind you the south of Ireland is legalising for medicinal purposes so could move there instead but want the sun. The politicians here in the north the main party, the DUP manipulate things for themselves and use drugs as a tool to scare up votes, (as did their main opponents Sinn Féin) as a very backward society I can't see it being made legal here any time soon, (f**king politicians).

I would agree with you that many slip through the cracks, are misdiagnosed or down right ignored by incompetent Drs, (I have met many of them both professionally and personally). I was lucky to have a good Occupational Health Dr who pointed me in the direction of Dr William Weir of Harley Street who was/is fantastic and developed a plan for me that brought good benefit. He is very understanding and compassionate and very good value for money, (although the little communist that lives within me didn't like that I went private but needs must as they say).

The sleep is a laugh I can be too tired to move but not able to sleep, I can sleep all day and sleep all night at times and then there are days and nights where I lie in bed looking at the roof or am on the couch rolling in pain. In fact we bought the sofa with me sleeping on it in mind. I keep a sleeping bag behind it and it has become the epicentre of my universe - all happens from here

Fair play to you travelling when not well, I would be too worried I wouldn't know what was going on. Were you on your own? We went on holidays this year and I barely remember getting there - the kids thought I was drunk! Mind you after a day or two things came round since I was lying in the sun all day, (heaven).

Good that you can do your work to suit your health, long may it last. I would love to be able to do something but know my head wouldn't allow it as I still get confused and flustered easily. IF I didn't have the RLS maybe I could manage the ME better but the two exacerbate each other. Thankfully there is a RLS group on here too so I have learned much and get to help others as well as get help, gives a sense of purpose which is great.

Take care and great chatting with you.

[Chiqihoopini]

Ooh Spain sounds like a great idea even more so with this cold snap that's descended on us lol! Great that you found a good specialist they are rare gems. I got my diagnosis through an immunologist, Dr. Joe Fitzgibbons in the Hermitage. There must be a communist in me too lol I went private while I was on welfare, I'm so lucky my family helped me out otherwise I'd still be rebounding round the mental health service not getting answers - that whole system is a disgrace imo.

That sofa sounds like a great investment. I do all my business from me bed. I tell myself I won't lie down but I always end up lying down even if it's just to stare at the ceiling it's taken me a long time to accept it's not laziness it's necessity. Especially with mm in my system. Cannabis is a bit risky alright but I won't be giving it up until I'm better that's for sure

I did travel by myself but all I thought that was wrong with me was depression and partying too hard in Ireland. I really didn't want to come back to Ireland until I'd sorted myself out but I got an emergency appendectomy in Malaysia and money ran out and the universe brought me home and it took two more years to get a diagnosis. Sunshine is heaven, you're dead right, I didn't feel half as shattered and flared abroad as I do here.

This site is fantastic for all the different groups it caters for. It's so hard to find a balance when one thing triggers the other at least you can bounce off people in here with ideas and get their experiences directly. I'm currently trying H2O2 therapy and I'm feeling a bit of extra energy but it could also be placebo so I'll wait for a few more months before I get on a soap box about it haha

Well I hope you and the family are well wrapped up and cosy indoors I'm looking forward to getting home and fleeced up myself. Have a lovely weekend