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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.

izchaz Fri 09-Aug-13 22:29:24

I've just learned to listen to what my body tells me - I did the damage by not listening and over-training in my teens, I will spend the rest of my life paying for my arrogance in thinking I could override my own need for down time. Still, it taught me to be realistic about goals and desires, it also taught me how dangerous hubris and pride can be. It's not OA, it's the sort of wear and tear you might see in the joints of a lifetime active 60 something. Not pretty! My consultant used to jokingly call me his little mutant...

JoAlone Fri 09-Aug-13 20:24:51

Ischaz , way too young for me, the 'cougar' thing has never been something I have aspired to.

Wow, so there you are, full of aching joints etc, and you are concerned about SIL, I would hazzard a guess that you probably have greater health probs than she does TBH. 20 something is very young for a knee replacement offer!! they must be advanced. I hope you make it ok through your pregnancy as the load increases. Hope you have had good advice and care for your joints. is it OA?

izchaz Fri 09-Aug-13 12:43:22

Jo can you cope with dating chaps in their very late twenties and early thirties? That is her bracket at the moment. I think your suggestions for broaching are genius, I shall try tonight when DH takes the dog out. I know exactly what you mean about defensiveness - I've had long term joint problems and walk like a drunk when it's bad, and get very tetchy with people who tell me that 20something is too young to have been offered knee replacement surgery. Frankly am amazed I'm still walking at 20 weeks pregnant, was fully expecting legs to snap off!

Have a great weekend all, will check back soon but have a very busy weekend ahead.

JoAlone Fri 09-Aug-13 10:55:52

izchaz wow, all these lovely men, and I can't find one nice one, any over 45 going spare..(hopeful wink).

Sounds like she needs to apply 'pacing'. She is definitely caught up in a rut. Mickel therapy sounds similar to what I sort of did, but not in a focussed way, I taught my body to take on more and more, but not 'fighting', as you say, working with. And now 15 years later, degree in hand, can say I am on the recovery route.

The thing with people who have an illness that is poorly misunderstood is that they can become very defensive if they think you are trying to undermine their own management of it. If I were in your shoes, I might broach the subject by trying to get her to give you the answers herself. Like asking her a bit more about Mickel therapy and what it was she found most useful. That is likely to start her thinking about what 'healthy' habits helped her, and it will open up it's own little ripple effect. And then you could throw something in like 'oh, that's similar, but obviously more complicated, than some stuff on pacing I have been reading recently'. You sound like a fabulous sister in law, she is lucky to have you, but make sure you look after yourself. Don't let her drag you into being her new co-dependent. You could even 'ask her for advice/explanation' or things that helped her. Hopefully she will come out with something like, 'that really helped, but I have been really bad at applying it', and bingo, lightbulb moment, and it gives her the power to change.

Good luck, and happy weekend to all thread posters.

izchaz Thu 08-Aug-13 21:49:00

Frau - I will try your approach, I can definitely see the merit in letting her set the pace - it is certainly what I would do in a professional capacity with someone who was chronically unwell or recuperating/rehabilitating. My difficulty comes in that she's quite proud, I think much of the unspoken nature of her illness within the family stems from her reluctance to engage with anyone but her mum about it. So I'm not sure how asking her if she's up to X or Y would go down. Still can only try. Thanks for clarifying the bit about fighting illness/working with it, I hadn't really acknowledged the difference, and there definitely is one.

Froggers thank you for coming back and expanding on your earlier post, it's incredibly helpful to have an insiders perspective on the therapy. It has helped her before, and so I hope it will help now. She is coming over tomorrow evening for dinner, and I'd like to make it a more regular thing, because we live in a spectacular place and she's always said the drive is very relaxing. Plus it means we get some one-on-one time with her away from the usual stressors of city life and family etc.

froggers1 Thu 08-Aug-13 20:42:01

It was a while ago now that I did the Mickel therapy. I was very lucky - I was living in NZ at the time and Dr Mickel came out to start training counsellors in it. I was lucky to meet him and he worked with via email from Scotland. I can't remember all the ins and outs but essentially the hypothalamus gets permanently 'switched on'. This means that sleep becomes difficult, muscle pain, over active digestion, over active immune system etc. What Mickel Therapy does is to help the over stimulation. BUT for the patient you don't need to understand all the physiology. Essentially, you keep a diary outlining when your symptoms flare up and then you have to label it (from memory). For example, there a few keys - one I remember is to learn to say no to people, another is to deal with your emotions as they happen. So an example may be your husband has got cross with you for not doing the dishes. With Mickel you must act on your emotions in a constructive way. Not letting things fester...So, you would speak to your husband about it and not let it eat away at you....another example, may be that your glands start to ache while on the computer. So, you need to change the action - i.e. go for a walk, make a cup of tea.. it sounds really simple and is once you get into it!!!

I am 'recovered' but would say that the tendency to relapse is always there. I haven't had a proper relapse since I did the Mickel therapy but would say that my energy levels are still not 100%. Although I did complete a 10 mile walk a couple of months ago and when I consider that I was unable to walk down the stairs some days a few yrs ago that is a big turnaround!

The main thing to do if you want to be supportive is to not judge but to just make sure that you take the person out for a break if they are up to it as sitting in at home makes you very depressed and can make the symptoms worse..

FrauMoose Thu 08-Aug-13 19:57:21

I am not sure that I believe in 'fighting' illness. There's a sense in which I felt it was more about working with it - doing what ME let me do - and trying to maintain a sense of identity even when the symptoms made me feel less of a person.

I think all you can do with ill people is be yourself, try not to judge people or be falsely cheery - and keep the lines of communication open. Perhaps questions like, 'Are you able to do this today?' and/or 'What would make this manageable for you?' and/or 'Do you need to stop/rest for a bit?' are useful given that ME symptoms fluctuate.

izchaz Thu 08-Aug-13 19:57:13

Another question, sorry! How does diet play into the picture? Is the aim simply to reduce the crap your body has to process?

izchaz Thu 08-Aug-13 19:53:47

Frau that list is super helpful - not least because there's a lot there I can do by virtue of being her SIL, so even if I don't figure out how to talk to her about all of this I can at least make incremental changes to build her up. Do say if it's not something you're prepared to talk about, but might I ask how the suicide of your friend change things? Was it a sort of "snap out of it" moment, or more a "fight because giving up isn't the way to go" thing? Or have I totally missed the point?

Twas sounds like you're in an awful catch-22, I hope some of the stuff on here is able to help a little.

Jo you make an intruiging point in terms of being kind to yourself: I'm not sure that she is, she hates having empty space or time in her life that I think she probably runs herself ragged, then falls back on MIL to pick her up and fix her again. Obviously, even were MIL not so ill in her own right this would not be sustainable, but how to encourage her to break the cycle?

Her behaviour is so repeated - it's like she's on a 6-8 month cycle: meet guy, socialise with guy often to the exclusion of family (apart from MIL) and friends, get very excited about guy, work more and more hours across both jobs, become tired, complain to MIL about boy niggles, break up with boy and allow MIL to ratify and justify that decision by badmouthing and demonising boy, socialise exclusively with MIL and cut back hours on both jobs for several months recuperation, appear on plentyoffish/similar and repeat...
Thing is, for the most part the guys she dates aren't bad lads, lovely calm chaps who try to maintain a normal relationship, but she finds fault everywhere, it's almost (prepare for cynicism) like she has the relationship SO she can have the breakup. The last guy she binned was an absolute star who she has now run through the mill, and several of her other exes have been friends of mine or DHs, so it's hard to hear her be so harsh about guys I know to be good men.

I've gone a little off topic there I think...sorry!

izchaz Thu 08-Aug-13 19:39:39

Antimatter and Jo your stories are so inspiring, thank you for sharing, obviously you both have incredibly strength of will and fought with everything you have to get out of poor health, it's also nice to know that you both have coping strategies in place to try and prevent relapse. I wish I was able to talk more to SIL about this - but since it's all terribly hush hush in the family I've not the first idea how to broach these ideas with her. Classic case of me getting info and then being at a loss as to how to apply it!

izchaz Thu 08-Aug-13 19:35:43

Frogger great to have someone who's experienced Mickel Therapy. I've so many questions about it - how is it possible to train the hypothalamus? I ask because in my years of studying physiology and anatomy I was always told by people who are so clever it hurts that it deals with subconscious inputs - day length, blood pressure, pathogenic activity, pheromone presence and a whole load of circulating messenger molecules in the blood. So logic tells me that training the gland as a whole must be more subtle than I'd first imagined, since the conscious mind is not in contact with it as it were. How is the training done? What is the goal (obviously the ultimate goal is return to health, but what are the waymarkers and milestones?). Is it about building a framework for activity and sticking to it rigidly, or...I don't know... I haven't found the MT websites terribly informative unfortunately. It's great that you have improved and stayed healthy for so long, that is very encouraging.

TwasBrillig Thu 08-Aug-13 18:27:56

Sounds like you're managing it really well. I'm wanting to go back to work for brain stimulation but terrified of not managing it, especially when I'm fee.ling as I do now.

JoAlone Thu 08-Aug-13 17:42:16

I agree with not making long term drastic changes to diet. I went on a candida diet, under supervision, and that turned things around for me, there are various forms of doing this, but the main emphasis is to 'eat clean' and stay off wheat and cows milk for a while. But it's not for everyone. I do now eat wheat and have cows milk in my tea and coffee. I stopped drinking any kind of soda drinks years ago, even the diet ones, as they are jam packed with chemicals your body then has to process. The emphasis is mainly on working with your body to help it cope, rather than load it with rubbish that will put extra stress on it when you are already sick.

If I feel I am at risk of getting ill I strip my life down to my functioning needs. So, no, I don't go to bed for days, I think you are right TwasBrillig that it would start the cycle off again, or at the very least, have secondary complications of reduced muscle function/tone, and aching joints from lack of movement, and those can be hard to differentiate from other ME symptoms.

I would usually try to write out some sort of 'plan of action', even the stupid stuff, like who I will call etc. I will write down everything I absolutely have to do, like make food for DD and me, and work etc. I take a tonic (anything to help your energy levels). I don't have much family, and don't want to load my friends up with stress, they can't really do anything to help, and after a day at work, I generally don't want to talk, because my voice starts to go anyway (I have to do a lot of talking in my job). I leave any non-essential washing etc off my list. If I have to cook, I try to make one big batch to feed us for 2-3 days, saves on washing and cleaning as well. I normally get to bed by 9, or earlier if possible, and get up a tad earlier because I know it is just going to take that bit longer to do anything. My job is pretty relentless, and I struggle with that, but I seem to have managed so far.

I find within a few days of taking a 'proactive' approach in times of stress tends to help. As I said I recently went through a difficult divorce, the stress was drawn out, and I found I had to make more of an effort to be kind to myself. It all culminated in a relentless stressful period from August till Feb that really took it out of me, plus add on a chest infection and I was at serious risk of complete relapse. It was very difficult, but my strategies and a very good tonic helped me through.

I didn't exercise during this time, as I simply did not have the energy, or time. But I am now back exercising. I find exercise both a physical and emotional effort, probably mental effort would be a better description. When I am feeling a little more energetic, I start off very slowly, gentle jog etc, but my limits soon show themselves, as you say, too much too soon leaves you incapacitated. It's about getting to know your personal limits, and gently nudging them outward.

I hope that helps give a bit more detail. The take home message is: Strip your life down to the essentials, and be very kind to yourself.

FrauMoose Thu 08-Aug-13 17:06:25

I think I just recovered with time and TLC from friends. My family tried to help, but there were just some longstanding difficulties which meant that they couldn't really be the ones who would get me through.

I was ill in a pre-internet age, which meant that I kept in touch with people via letter rather than online forums etc. A few old friends were brilliant - though some people inevitably fell by the wayside.

There really wasn't a magic cure. Getting better was a slow up-and-down process. I have a vague theory that the suicide of somebody I knew around that time helped me to realise the extent to which I was still in the land of the living. And doing some studying as my powers of concentration improved also felt like a positive thing to do.

TwasBrillig Thu 08-Aug-13 16:59:14

How did you recover e
Frau? And I agree with you helpful list. I have very unsu pportive family sadly. I keep trying to tell myself I don't have it and battle on but I feel I'm making myself worse.

FrauMoose Thu 08-Aug-13 16:27:03

I had ME in the latter half of my twenties, but began to recover in my early thirties.

I now lead an ordinary life, go on walking holidays, do 10k runs etc - though haven't been running recently.

For me the ME was very tied up with muscular weakness rather than the digestive intolerances some people report. It just didn't feel physically like the times earlier in my life, when I'd sometimes felt low-sprited.

Sometimes if I pick up a cold virus I go achey and weak again - but this would normally pass after a day or so.

I think some ME sufferers do go in for alternative therapies - some of which strike me as very dodgy. I am particularly wary of extreme diets, though if somebody decides that's the way to go it probably isn't easy - or advisable - to talk them out of it.

When I was at my most ill, I think what helped was when people kept in touch, provided me with company and/or bits of practical help and tolerated my fluctating energy levels. I appreciated being taken for outings too, on my better days.

TwasBrillig Thu 08-Aug-13 16:15:50

Interested to hear what you do if you feel you are relapsing? I've had mine under control for a while but recent stress has set off the feelings of complete lethargy again.

So far I've seen healthy eating. I can't exercise much (trying very short walks each day and occasionally out all day and then exhausted the next).

Do you sleep it off for a few days (I'm scared that will start a cycle again).

I'm desperately trying to keep up with children's care, I've already reduced activities but not sure how to stop the downward spiral.

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

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.

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 15:22:50

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.

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 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.

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

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

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

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