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please help me understand M.E. and what i can do to help.

(42 Posts)
izchaz Sun 04-Aug-13 12:53:26

This is likely to be long I'm afraid. I'll try and set it out in some sort or order, but I'm not sure I understand exactly what I'm asking for yet!

Precis: I am told that my SIL had severe M.E in her late teenage years, culminating in time spent in a wheelchair and a tremor/spasm of some sort. She has been physically healthy for many years now, but has struggled ever since (about a decade) with moderate to life-limiting depression.

My MIL, her mother is in the final stages of an ugly battle with cancer, and spoke to me in confidence the other day, saying that she fears her daughter is backsliding into another bout of M.E as a result of the stress of losing her mother a day at a time. (I don't know if it's relavent but SIL is not involved in MIL's care, but the two are very close and MIL was SIL's primary carer throughout her first battle with M.E).

Now I know almost nothing about M.E, excepting that after glandular fever I was diagnosed with it, all I remember is feeling very tired for about 6 months and having the attention span of a gnat, but I understand there must be a spectrum of symptoms it's possible to suffer with.

ILs and family have always spoken about SILs illness in hushed tones, I know she was ill and that it was serious for a number of years, but have no further clue really other than yesrterday's revelation about the tremor and the wheelchair use. MIL has always spoken supportively of SIL, and until yesterday I never though she doubted the veracity of her daughter's illness. However she said that the Mickel therapy that SIL underwent years ago "cured her, as much as an alcoholic is ever cured" which made me think that perhaps MIL believes/believed SIL was making it up, or making herself sicker - I can't explain why I got that vibe but I did. Several other, more distant family members have always maintained that SIL created or exacerbated her illness to maintain a codependent relationship with her mother (as does DH in his less generous moments).

Questions:
1) what are the symptoms of M.E as experienced by a sufferer?
2 how would I/one know if SIL is faking/suffering psychosematically (sp?) and can she be helped to improve if that is the case?
3) what is Mickel therapy? I have looked it up and Dr Google gives me sales websites for Mickel therapists and pop-sci blogs talking about how it's quackery. I'm after fact, statistics, how it works, what's the process of work? Etc...
4) how can I help SIL through the grief of losing her mother and struggling with energy and stress levels at this time? (DH is fortunately slightly easier to read than SIL).
5) am I approaching this all wrong? If so what should I be doing?

As I said above I have so little experience in this, I work in healthcare but have never had to look after or support an M.E sufferer before, I want to support, but am cautious not to make things worse/set myself up codependently as SIL is with MIL. I hope none of what I have said or how I have phrased things has caused offence, I'm not trying to upset, only to understand.

JoAlone Sun 04-Aug-13 13:53:17

Izchaz Hi,

I am both someone who was diagnosed with ME and works in the health profession, sometimes with sufferers, although they are not my main patient group, only have a few.

It is a very poorly misunderstood illness, and it is multifactorial. You have not offended in any way, don't worry about being too P.C. if someone wants to be offended by your post, they will be, that cannot be avoided, so don't stress too much about it.

There are as many explanations and 'cures' for it as there are different designs for knickers, so no doubt anyone will be confused.

I got diagnosed a year after my daughters birth, and also after a bout of Glandular fever. It knocked me sideways, until my doctor took blood tests that showed I had the Cocsackie and Epstein Barr virus, apparantley 2 of the 3 associated with ME. I was told by my GP to get lots of rest and a good multi vitamin, as the medical profession doesn't have any cure.

I got really depressed as it felt like a life sentence, on the net there are so many horrible stories about people having to use wheelchairs etc.

In my experience, and note this is only my personal experience. It depends a lot on your personality. I am a fighter. I sought answers until I found one that made sense. It is a post viral fatigue syndrome. I got advised to go on a Candida diet, which did the trick for me. Even though I had no energy to fight, I took it step by step. I even joined a running club, and despite needing 3 days to recover from a 7 minute walk, I ended up running 6Km only about 6 months later. It was a stop start affair, where I would have to stop, recover for a week or two, and get back on with things.

Consequent to that I have done a degree as a mature student, and now do a full time job and am a single mother of a teenage daughter.

In my professional experience I find some people do make ME their life choice, and although many of them are really struggling, I personally believe that they mistake emotional exhaustion for physical symptoms. You are right to worry about having a co-dependent relationship with your SIL, and to a degree your DH is right, men are good at being blunt about these things, whereas we tend to become emotionally connected to them.

I got better because I HAD to, I had a one year old who was dependent on me. I was married at the time, but my husband was definitely not going to stick by me if I got sick, he couldn't handle it if I didn't manage supper on time. I had no family support, or anyone that would help me. I have fought depression all my life, caused by a very disruptive childhood, and in adulthood due to a very unhappy marriage, and consequent divorce. But like I said in the beginning, I am a fighter, and I don't give in that easily. I used to when I was younger, and it sucks the life out of you and everyone around you. The people in your SIL's life are probably responding to that as well. No one wants to be near a 'victim' all the time.

Her problems are very real to her, but no one will do her any favours by 'taking care' of her. You can by all means offer your support, but it is her life. We all deal with loss, and it must be awful watching a parent die (I don't really have parents, so wouldn't know for sure), but she will have to go through that pain, no one can shield her from that. Sometimes illness can be a coping stratergy, I know, I used to use it at one time, but it doesn't solve the longterm problem.

O.K. I have banged on here and probably bored you half to death, but hopefully it has given you at least one persons perspective.

3) I have no idea what Mickel therapy is.

2) You won't know if she is faking it, you have to trust your gut. Is she just using her illness to get attention, or is it the depression? She probably would do better seeing a therapist who is not emotionally connected to her and has more experience with grief counselling, and depression.

4) See answer for 2.

5) You are approaching it with the knowledge and wisdom you have, surely thant can't be wrong. And you are asking for help, always a good indication that you are trying to do the right thing. You do sound very involved already, be careful you don't have the life sucked out of you. Make sure you focus on your own life, and not her loss. It is her loss, not yours, this is about 'problem ownership'.

Best of luck to you, hope I didn't confuse issues more.

izchaz Sun 04-Aug-13 14:32:11

Jo - thank you so much for responding, and with such frank clarity, that really helped, and I'm so sorry you've been through such a rough time over the years. I've always felt that SIL sort of offloaded the things she couldn't deal with onto others (especially her mum), but in other ways she is remarkably strong (for example she broke the news of her mother's terminal condition to all of her mum's friends, because MIL couldn't face doing it herself). MIL said yesterday that she thinks SIL is taking more personal responsibility for her own wellbeing this time around - enrolling in a gym and going to some of the classes, seeking out her old Mickel Therapist from last time (so glad I'm not the only one who'd never heard of it... £80 a throw apparently, bloody terrifying!), so she is taking steps to try and slow her descent into ill health.

My concern is mostly that when MIL does die she will crash utterly, which would be so sad as she has clawed herself out of the mire (that no one will talk about) of her late teens to hold down a full time job and run her own business, live alone and look after 2 cats - all things her mother never believed her capable of). I know it's little compared to your own achievements, but I would hate to see her lose ground when she has ostensibly come so far.
I'm not overly worried about becoming embroiled in it all - I promised MIL I would keep an eye on her daughter, and support where appropriate, but I've her son to look after and a baby on the way, so I doubt I will have time to do the sort of handholding that would allow a very negative bond to form; plus we're not overly close, I doubt we would be more than friendly acquaintances had I not married her brother.

Another thing that might bear scrutiny - she has few friends, all of them are women, and all of them are dysfunctional, I refer to them as her "sex and the city cretins" because they exasperate me: poor relationships, dithery, no drive in life, bright but squander what they have on absolute wasters. Which is not to say they're not nice ladies in their own way, I'm sure they are, but they allow SIL to compare herself favourably to her peers, when that might not necessarily be that productive for her, or that accurate across a wider peer group. Does that make sense?

JoAlone Sun 04-Aug-13 14:58:55

You are welcome.

Yep, you are right, her environment doesn't sound helpful. There is a thing called 'fear of success' people get into a sort of 'holding pattern' that keeps them where they are, because they fear loosing things like friends etc. It is a scary old place this world, and she probably will have an element of fearing loosing her 'good' friends if she suddenly starts taking more control. Relationships seem to work that way, and I wonder what her relationship with her mother is/was like, did her mom become a co-dependent in her illness? Did it give her a 'role' when her children were about to leave home? I see every single day people being 'kept' in sick roles because it gives their significant others a role. How many people have you heard of who 'had to give up work to be the carer' for their (insert family member).

Sounds like she has tried to give it a go, and sorry for sounding pesimistic, but sharing bad news isn't necessarily a sign of strength, she may have enjoyed the role of receiving the initial shock and supportive response (sorry if I sound pessimistic). I don't know her, just talking from experience of other people. Maybe she is coping better now that she knows her mom's illness is significant, perhaps it is making her take stock, I hope so. But patterns of behaviour are hard to break.

Good luck to you, I hope you get a few more opinions from others, always helpful having a few different view points.

A useful term for you to look up might be 'Internal locus of control' vs 'external locus of control'.

izchaz Sun 04-Aug-13 22:07:00

Jo - I think you're absolutely right about her holding pattern - everyone just thinks of her as "SIL", when I first grumped about her dumping of stuff onto other people (repeatedly me/DH) I was told "oh, that's just SIL, she's always like that, you'll get used to it". The whole family sort of don't expect anything of her, which I thought was odd - given that she was ostensibly better - now that she is struggling again it makes sense to be a bit more lenient when she doesn't show up or demands help with household tasks (often from her increasingly ill mum, but that's another matter).

I think MIL and SIL set up quite the codependent thing - until MIL became terminal they would both moan about how much the other relied upon them, then jump (to an outside eye) at any chance to create a reason why the other needed them. Not healthy, but it seemed to keep them both happy, and the larger family doesn't ever mess with the status quo, especially as MIL is absolutely the matriarch of the whole group.

I'm coming off as quite scathing here, I don't mean to, but I have been frustrated for years by the sort of hushed tones "oh she was very sick" schpiel, without any evidence or back story to explain how/why she was so sick. I am so worried she won't cope as her mum progresses, and that her mum will overexert herself to try and protect her, and probably shorten her own life in so doing.

I will deffo look up those terms, I think clarity in what she's dealing with will help me identify and maybe see her perspective and the drivers for all this a little more clearly. We shall see!

izchaz Sun 04-Aug-13 22:21:01

Reading about Loci - bloody fascinating, thank you for poking me in this direction!

JoAlone Sun 04-Aug-13 22:53:34

Iz you don't sound scathing at all. This is what these forums are for. I am surprised no one else has waded in on this post yet. You sound like someone trying to make sense of an elusive situation. She was sick, she isn't anymore. From my understanding these virus's become 'active' or 'inactive'. When they are 'inactive' you can lead a perfectly normal life, as evidenced by mine. When/If you become very stressed and overworked, you get sick, you take the time to get better, then you get on with it again. The main key for me is to make sure I don't get to exhaustion point. I go to bed with the dishes unwashed if it has been a heavy day, just means I do them tomorrow, and I stay well (as long as the house doesn't become a health hazzard in itself of course). I live my life like everyone else does and in the last 15 years I have at times (especially during my final year at uni, and during my divorce) skirted the boundaries of possibly becoming sick again, but just took things down a pace, fed myself healthy food, upped the tonic (not the type you add gin to sad) and made a priority list. But no one helped me with my housework etc. I can imagine you deal with a lot, especially with baby on the way (good luck btw) and probably managing your own home etc, and we usually have our radars atuned to those people who are just 'taking the piss'.

antimatter Sun 04-Aug-13 23:08:47

Thanks JoAlone for explaining ME in greater depth to me.

How do people know they aren't depressed but have/suspect ME?

antimatter Sun 04-Aug-13 23:15:59

I know you explained about virus tests, but I was diagnosed with depression when I was exhausted and couldn't sleep well, felt extremely run down.

izchaz Mon 05-Aug-13 00:05:34

Jo - thank you for understanding, it's difficult, because if she is genuinely unwell it's a classic case of "invisible disease", and very difficult to gauge externally. I want to be of constructive use to my family, but as you have surmised I have time constraints that will only gt worse in the coming months, so I need to make sure any help/support I can give is accurately directed and actually of some use!
SIL it seems is not brill at managing her down time - she hates inactivity of any kind (I wonder if perhaps she struggles to be alone with her own thoughts), and fills her time with carefully planned social engagements and dates with guys that never progress beyond a few months before the relationships break down.

I'm rambling, what I'm trying to say is I don't think she has the capacity, or is unwilling perhaps to make changes according to her energy levels as you do. Hence she is becoming alarming run down (HR involvement at work, potentially at a stage where lack of HR resolution will result in termination of contract if her stress/tiredness is linked to work - which is what she's telling them).

izchaz Mon 05-Aug-13 11:47:00

Antimatter - hopefully someone will come along soon and give us their angle, hope it answers your questions.

JoAlone Mon 05-Aug-13 21:37:16

HI Antimatter. I do not diagnose, I am not a GP, so I can only speak from my experience. I have struggled, and overcome both depression and ME.

All I can say from my experience is that when I had ME I was sick, I kept on loosing my voice, was hoarse most of the time and had flu like symptoms. When I had depression, I just felt like the lifeblood was drained from me. I struggled with sleep in that I never felt I slept deeply, the type of tired is different, and difficult to explain. With ME I could nod off anywhere, the worst one being when I fell asleep at a red traffic light with my daughter in the back of the car. I woke up to cars hooting at me, I was completely gone. I also once felt the extreme tiredness come over me, and I had a half hour drive to get home, so I stopped off, got a Red Bull and chocolate to get me home, when I got home I fell into a very deep sleep for hours, this was about 4pm. When I suffered with depression I felt tired, but struggled to get to sleep a lot of the time, and felt like I just didn't want to face the world at all. During ME I wanted to participate in the world, but the fatigue is what stopped me.

My advice to you, if you feel you have ME, you can ask your GP to do blood tests, but they don't always, as not all GP's know what to test for. But more importantly, if you feel depressed, then a counsellor is your best option. I have spent a lot of time in therapy, and have been lucky enough to have some really good therapists. I have read tons of books, my favourite (albeit written by a religious author, but don't be put off, it was my first turnaround book) was The Road Less Travelled.

I hope that helps. Was really hoping some more MN's would wade in, but it seems quite quiet on this thread. I am not an expert and can only talk from my own experiences.

to read later ....

CFSKate Mon 05-Aug-13 22:36:38

I have ME.

The latest research suggests it may be auto immune, like multiple sclerosis or rheumatoid arthritis.

"the one thing that did impress me was that there was an enormous amount of immune-reactivity that appeared to be non-specific in these individuals. So at a time when people were saying this was a psychosomatic disorder, I said two-thirds to three-quarters of the individuals whom we’ve studied have polyclonal B-cell activation. They’re sick. We don’t know why. But they’re sick. So that’s really the take home point." Professor W. Ian Lipkin

When these B-cells are removed (using a cancer drug which is also used for rheumatoid arthritis), 2/3rds patients get better. This news report is 2 years ago, they have made more progress since then.

Invest in ME essential website

CFSKate Mon 05-Aug-13 22:54:51

have a look at this PDF and use the search function for depress

"The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions."

" These impairments and the loss of invigorating effects distinguish ME from depression"

"hypoperfusion in brainstem distinguishes ME from depression"

"metabolism in brain stem differentiates ME from depression "

"Many objective indices can differentiate ME from primary depression, e.g. reactions to exercise, joint and muscle pain, severe headaches, recurrent sore throats."

antimatter Tue 06-Aug-13 08:10:34

thanks JoAlone for that explanation

I did got over my depression using and and counseling, I got a job soon after and have been employed ever since

I was asking as I am a curious mind and like the way you've explained ME earlier.

I def not had ME as both AD and sessions of counseling helped me. I get melancholic some days, maybe once a month if that and see it as part of my personality and know will get over it smile

So again thanks for your explanation and am really glad that you found strength to get over it.

izchaz Tue 06-Aug-13 10:02:48

Kate - thank you for your input, I will have a look at the links you posted. Very helpful.

izchaz Thu 08-Aug-13 10:24:54

Bumping in case there's someone else out there with an angle/theory/experience to share.

CFSKate Thu 08-Aug-13 14:42:45

me again, this website is for a film about severe ME
voicesfromtheshadowsfilm.co.uk/2013/naomis-article-in-the-dailytelegraph/ it links to an article in the Telegraph about very severe ME.

the first post in this thread is very good, it is about chronic pain, but applies very well to ME.
www.mumsnet.com/Talk/_chat/1815602-Do-you-get-fed-up-with-people-saying-they-are-in-chronic-pain

JoAlone Thu 08-Aug-13 14:56:36

Antimatter you are very welcome. Depression is a funny old thing. I was lucky enough never to need to depend on meds, I refused them when I was offered them by my GP. There is a whole debate about anti-depression meds, but I have a friend, who has to go back on them every now and again. I would rather have him on meds and alive and functioning, than off them and not be here. I always promised myself if I ever had suicidal thoughts (again) I would go onto meds. I did once turn around at the brink of jumping off a 9th story building, the phone rang, and I decided I could come back later. So I have been incredibly depressed, I think we always hold out hope something will get better, make it better etc. I still have days when I worry I will go back into depression, but I use all the 'tools' I learned, such as doing physical exercise, making up lists or writing a diary. It all helps. I think it is normal to have a 'sad' or 'melancholy' day from time to time, even if you are not depressed. We get depressed for a reason, and often reasons outside of our control. It takes an enormous amount of willpower to climb out of that hole, and change your attitude/mindset/thinking patter, but it sounds as if you are there. From one survivor to the next flowers. I hope you keep going on this path, there are many pitfalls, and depression loves welcoming you back.

Sorry I have sort of 'hijacked' this thread on M.E. for a bit. But I think depression is a very real side effect of M.E. just not to be confused with it.

antimatter Thu 08-Aug-13 15:15:10

I HAD to function again.
I have no family nearby at all.
Ex's family is helpful but they have full-time jobs, kids,ex's elderly parents to look after too.

Kids needed me more than I needed myself (or so I thought) - so I did it. In the process I learned a lot about myself and am happier person now than I've been for many, many years.

I know that ME is a misunderstood illness and that's why I am asking those questions so I don't pass wrong judgment on anyone or make an unhelpful comment by mistake.

JoAlone Thu 08-Aug-13 15:22:50

CFSKate Very good articles, and these are indeed very rare forms of ME. I have only met one in my time as a health professional that had this severity of ME. The significant factor being that whilst they have 'good days' and 'bad days', they do not normally recover their abilty to live without a wheelchair and have significant pain. Most CFS/ME patients, including myself, have forms that are controllable with the right lifestyle choices. I would never dismiss my ME patients as having a 'psychological' disease, I find this very belittleling to anyone who is looking for answers. Our OP SIS clearly has a kind that can in fact be managed by lifestyle, evidenced by her being able to have a job and 2 cats as well as manage her own home. Normally if you can achieve this level of function, then it is a case of lifestyle choices. I for example know that if I have late nights, and eat unhealthy foods I can set my clock by when I will start to loose my voice, get joint aches and start feeling generally unwell. I am surprised that my fairly recent divorce with it's associated emotional stress did not 'set me off'. But I think it's mainly due to failsafe systems I have learnt to build in. When I am tired I sleep, a lot, until I don't need to, even if it means house chores get left undone. I have failsafe quick healthy recipes that I know will not take a lot of energy to prepare, but will keep me healthy.

When I was first diagnosed, stories like the ones you have put up on here was all I could read about on the internet. It really depressed me (even more than I already was). There were no 'good stories' of sufferers. So occassionally when I am dealing with an ME patient (but not as a rule) I tell them about my diagnosis. I only tell them if I think it will give them hope and motivation, because I think the public in general can forget that behind the uniforms we wear we are all people wiht our own stories, illnesses and problems. We are for all intents and purposes the 'faceless NHS'. I know a few colleagues who have struggled with ME. I think the main point I wanted to make to the OP, is that, yes, there is a choice in how you handle your diagnosis/illness. Her SIS appears to trade on it, and that for me is not healthy. There is a term called 'learned helplessness' and I see it in many people with different sorts of diagnosis, where a parent/husband/carer, will help someone for instance put on a jacket, where the patient themselves has no pain or disabiltiy in their uppor body. This action helps the sufferer loose muscle strength and co-ordination, despite their being no need for it, they then learn that they are incapable of putting on their own jacket, till someone like me 'challenges' them to try. I try to give people their lives and independence back, because I got mine back through sheer determination, and thankfully a mild form of ME.

froggers1 Thu 08-Aug-13 15:30:43

I had M.E for about 5 yrs and got better about 6 yrs ago. I think M.E is usually set off by being run down and having major stress in your life all at once. At least thats how it was for me. I then did Mickel Therapy which got me sorted out. Dr Mickel was a GP who couldn't cure his M.E patients so did a lot of research etc and started a special technique to help M.E patients. He essentially says that the hypothalamus in the brain gets put into over drive which causes the symptoms. You have to teach the gland to function normally again. This is done with various exercises such as keeping a very specific diary etc. It worked for me in about 3 months.
Anyway - hope this helps - I haven't read all the above comments as haven't got time at the moment but just wanted to offer a different slant..

JoAlone Thu 08-Aug-13 15:37:50

Antimatter Shows you have significant strength of character. You did it because you 'had' to, I know many that 'have' to and don't. And people around them, including their children suffer. So without sounding patronising, well done. Your kids will have learned a lot too, that with the right determination you can do anything. My DD always refers to me as someone she looks up to, because she knows what I have had to deal with (not by my choice, she was just there), and she has seen how other family members have taken on the victim role, and she recognises the difference. In a way it has made her a determined person too. I hope you don't take offence, but I really think you have a lot to feel proud of. I too did it with no support, and it is bloody tough.

antimatter Thu 08-Aug-13 16:02:14

Thanks JoAlone, I appreciate your kind words.
I think most days I forget how far I came - personally and professionally smile

Recently I said to a colleague it was a hard earned luck to get where I am now.

I don't go round talking abut those hard times, I am always joking and laughing as I remember that 3 years ago I was in my bed unable to make any sensible decision and take responsibility for myself.
AD's helped me with my patch sleep which was making me exhausted.
Since pulling myself up by my shoelaces I have more and more courage to be myself and just take everything as it comes - not wasting time on trying to help the whole world - as I first need to look after myself smile

My kids are looking up to me, but I haven;t shared my depression story with them, they value me for being the most positive person they know smile

I think that is really making my eyes sweat, every time I remember them telling me that.

I know we both should be proud of ourselves - so pat on your back from me too :D

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