@gemma81

Last reply

gemma81

Feeling so low (help)

Hi everyone, my name is Gemma. It's been months and months since I've been on here so please be with me while I have a moan. I was diagnosed with MS back in 2014 and since then I've had 4major relapses, 2while taking tecfidera in the last 10months! In the last 6mths or so it's finally hit home that I have MS and that it's had a impact on my life. Not saying I can't do anything but I certainly have to think about my day and plan. I've always been so independent and due to being a stubborn cow I still won't ask for help so then I struggle more! I have 2children 4&9 and two stepchildren. I was on tablets to help with nerve pain but they weren't helping so switched me to pregablin, after being on them for 6wks my Dr took me off them as my depression to me was worse and I was struggling with my bowel movements and I already suffer with IBS! Anyways I'm struggling to talk to anyone because they don't understand and just say I'm being stupid, drs won't give me anything, they said I've got to go on a stress management course! I also have anxiety issues and won't go anywhere New on my own or travel far. I'm also having another face to face medical nxt wk and I'm crapping myself coz I don't want them judging me on that day if I'm feeling OK. Please help as no one close to me understands :)

Mehdi

@Mehdi

Hey Gemma.. I hope you're not feeling too crappy.. I'm sorry to hear you're struggling to come to terms and adapt with your life-changing diagnosis.. It doesn't have to be an impediment.. If you take a minute out to sort out what you can/can't do in accordance to your low levels of energy, maybe you can allocate your energy more efficiently.. And dont feel bad about asking for help or saying you can't do something, it's OK. Not everyone will understand or see it from your point of view, but you've got to draw the line somewhere, for others more than yourself.. I wish you the very best and hope your children blossom before your eyes with no worry in the world :)

Stumbler

@Stumbler

Hi @gemma81, it does sound like you've now realised that your MS is here and now and it's something that you're going to have to deal with. This is all part of the journey that we've all undertaken to try and reach our acceptance of the fact that we have MS. You now need to stop beating yourself up about it and just acknowledge that the MS is something that you need to work with, so you can manage it. Are you in contact with your MS Nurse? The reason I ask is that your MS Nurse is the best person to try and understand what you're going through. They can give your GP guidance in the medications that they should consider for your nerve pain and your depression. We all need to manage the stress and anxiety that can come with MS. These negative emotions do not help and actually release chemicals in the brain, which can negatively affect our Central Nervous System (CNS). In this respect, look upon a Stress Management course as supplying you with some tools to help manage your MS. You sure have your work cut out for you with your children, so try and go easy on yourself. The calmer you can feel in yourself, then your MS will behave better too.

MsHackney

@MsHackney

Gemma, really sorry to hear you are feeling so low. I have 2 children too 6 & 9 and it can be quite a balancing act. My neuro and ms nurse referred me for a course of CBT when I was first diagnosed as I totally freaked out as I grew up with a dad who had a very aggressive form of PPMS. Can you speak to MS nurse/GP re sone sort of talking therapy. It really really helped me get things straight in my head. Hope you get some help soon X

gemma81

@gemma81

Many thanks Mehdi, stumbler and mshackney for ur kind words. It's so nice knowing u can moan away and see how other people are coping and we all understand each other as somewhere along the lines we have experienced similar symptoms. I love my children, they are my world my strength... I've never been offered any talking therapy which I think I need. My Dr's are rubbish and my MS nurse well I'm awaiting a phone call back. Onwards and upwards that's the way forward, I just need to believe in that. Take care all :)

MsHackney

@MsHackney

@gemma81 I noticed you live in Cardiff, maybe contact these guys http://www.cardiffmind.org/services/day-services/ as they should be able to help you. Also you can always talk here x

Emma_Cobb-Webb

@Emma_Cobb-Webb

Glad that you have moaned and got it off your chest - hope that it has helped as much as it does me :) I had a single episode in 2015 and then almost like clockwork had one 12 months later and have since been properly diagnosed and am just choosing between copaxone and tecfidera (might just flip a coin as I can't decide). Being honest, it's scrambled my brain and had a hard time between the first and second episode and I still am now really I suppose. On a positive note, have you read much about the paleo diet and the benefits for ibs and autoimmune conditions too? It's not necessarily a fix all and you have to find out what works for you and how to incorporate it into your daily life, but it can really help and I have found it to be really good at helping reduce stomach/digestion issues and other MS symptoms like my headaches too. http://www.thepaleomom.com/ is the website of DR Sarah Bannatyne and her book "the Paleo diet" is grand - meticulously written and researched (she is an immunologist and researcher) and gives a thorough explanation of everything she is advocating. I have a copy of it if you'd like to borrow? Good luck at your medical and I am sure that they will be anything but helpful and supportive. Keep smiling as much as you can :) PS. weblink corrected :wink: stumbler

potter

@potter

Let people help you and ask for help, it sounds like you are really stressed. There are some studies being done on how stress affects relapses. So far they believe that stress can increase to number of relapses you have. If you haven't done it yet get rid of the caffeine, cut down on the dairy and red meat. You may need to try a different medicine again, MS is a battle. Denice

AntonetteFick

@AntonetteFick

good luck Gemma.. and even though we all think it.. MS Sucks!!! everything is different than it used to be - and oh so scary sometimes.... every small pain ends up in with the worry of is this the next relapse, or at least this is what i experienced. a small headache or a sleeping limb makes me crazy.. ask for help even if you are independent.. you don't have to be supergirl every day.. hope your day gets better

Addick

@Addick

Gemma. I know what you are going through. Was diagnosed 2 years ago. I am in Bridgend. There is a local group here of younger people with MS - it was them that really helped as they understood and answered questions I had. There is a group in Cardiff - never met them but let me know if you want a contact there.

cameron

@cameron

Big hugs, @Gemma81. You can rely on the good advice here, because EVERY SINGLE PERSON who uses this site has been through the mill. I wanted to add my experience, i.e. that now - 12 years since diagnosis - I am fitter and healthier than I was then. The most troublesome symptoms have abated since I got the right meds and the right advice. I had no idea back then that there are things you can do to improve your quality of life. At the time, I felt it was totally out of my control, and that's a scary, scary feeling. As everyone is saying here, the game-changer is talking to the right people and getting heard. First step would usefully be to change your GP. He or she is the gateway to therapy and meds and needs to be totally on your case. Somebody so-so won't do at all and is holding you back. A good one will link in to your MS team and you'll get the wrap-around care that you (and we all) need.

Bellas1

@Bellas1

Hi Gemma, as a long term sufferer I've learned that when I have symptoms (fizzing, pain, numbness, hugs, whatever) reminding my brain that there is actually nothing wrong and it's just the MS sending out wrong messages so it can get stuffed, is a good strategy. Then I just get on with what I can do when I can do it and push myself a little but not enough to cause a full stop. Eat as well as you can and keep your limbs moving and please tackle your stress as nothing makes my MS flare worse than stress. In fact I've had to learn to blunt my emotions on a whole lot of issues and just refuse to get stressed about things which don't matter as much as my health. It's all easier said than done but trying to stay positive is really important so I really hope you can find light at the end of the tunnel. All the best.

Hoytfreak

@Hoytfreak

Big hugs to you Gemma81 I am diagnosed with rrms but I think it's moved to spms. I did the 5 days of lemtrada and its still getting worse. I'm the father of 3 boys and when I talked to my wife about going off work until I find out what is going on she told me to get out of the house. I'm trying to get the ms under control but I am now dealing with depression and loneliness. If I can carry these weights so can you. Just don't give up.

gemma81

@gemma81

Hi Emma_Cobb-Webb. Thanks for advice on the paleo diet I will certainly check it out. I did feel so much better having had a moan especially as on here everyone understands. My husband won't read up on MS, he says he's too scared to and that he just takes each day as it comes, so therefore how can I get him to understand how I'm feeling without him or anyone else looking at me stupid??? I do laugh at the situation and say I'm mad and special. Anyway enough of me blabbering on lol :) I hope ur feeling OK and are able to decide what meds is right for you. Let's us know how u get on. Good luck

Bellas1

@Bellas1

God that's awful. It is often impossible to explain the symptoms of MS to a non-sufferer and the stress of what's happening to your body and the underlying fear can be invisible to those who don't know what it's like. I can imagine the changes in you, her own fear and refusal to see how ill you are didn't help. It seems so cruel and I hope you can find a way out of this to a brighter, happier future.

gemma81

@gemma81

Hi addick, my occupational therapist has been trying to find me a local group to go to but they seem to be too far for me to travel. I live in blackwood not Cardiff, I must change that lol :) I spoke with the disability advice people today as I've got my pip medical nxt wk ( I'm so dredding it)and they were lovely. Not feeling too bad today hope all is well with u :)

Hoytfreak

@Hoytfreak

This site is very helpful for me. But I also go to the local ms meetings and it helps too. I don't know how they do things in the UK but I think it's important to meet with other people who are dealing with this crappy disease

gemma81

@gemma81

Hi Potter, ur absolutely correct, I have been really stressed and I know it's like the worst thing I could do but I think it's because of how my body has changed compared to how it was a couple of years ago. When I first got diagnosed the drs and nurses couldn't understand why I was so calm about the the news they had given me and still I'm OK yes I've got MS nothing I can do to change that. I read up on MS but still had no idea that it could change so many things, for instance on a bad day how difficult it can be to pick a kettle up, I mean hello I can't function in the morning without a cuppa lol :) u take simple things like that for granted! On a brighter note since coming bk on here I feel a little less stressed and that's thanks to all of u for ur support. ?

potter

@potter

Gemma my husband is exactly the same as your husband and it has been seven years. He is a good husband he keeps working so we can afford good insurance, helps with the housework and cooks. I think he'll come to terms with MS when a really bad relaspe happens, for now he won't talk about it. I don't complain I think this is the way he is dealing with it and he is a great husband.

gemma81

@gemma81

Hi hoytfreak, I'm still waiting for an ms group to be local enough for me to go to, as soon as there is one I intend on going as I think I need it. It's very life changing as I have found out properly in the last year. I saw my neurologist back in November and requested an urgent MRI scan to be done (had that yesterday) he feels my MS is highly active, don't quite understand what he means by that. He mentioned that if it is he wants me to start on tysabri (not sure if that's spelt right lol) I've read up on it and I've got to be honest it mentions that side effect PML and that scares me alot. I do not plan to give up I am a fighter, my kids need me and I need them, they are my strength I just need to get my head in the right place. Can u talk to ur wife about how u feel? My hubby doesn't want to read up on MS he said he's to scared, he is very supportive and he helps me when I let him but he lacks understanding how I feel. I don't know about u or anyone else but ms has affected my libido too an I think that has played a major part to my stress as I feel I've pushed my hubby away. Bloody MS it's got alot to answer for.

gemma81

@gemma81

Hi Bellas1, thank u for ur kind support. It is very hard for someone without ms to understand how difficult daily life can be. Don't get me wrong my hubby is a wonderful man and would do anything for me, I just wish he would read just a little on MS to have a little understanding. At the end of the day everyone has their own way of dealing with things. Do u struggle with memory loss? I'm replying to people on here but I have to keep going back and re reading what had been said as I just can't seem to take information in like I used to, passwords, drs App, shopping everything now has to be written down, and being reminded to do things, so frustrating.....

Hoytfreak

@Hoytfreak

Gemma I got books about ms and tried to get my wife to read about it to no avail, she refused to read them and she won't talk about it either. I think she is pushing me away so she doesn't have to see what it's doing to me or have to deal with it. The groups and sites like this one are a great help for me. I hope you find the same thing. Best wishes to you

Hoytfreak

@Hoytfreak

I did tysabri for nearly a year before changing to lemtrada. My neuro is saying that my rrms is highly active too. I'm convinced it has advanced to spms but I have to wait until he aggrees.

gemma81

@gemma81

Hoytfreak, I've got loads of information on MS that my occupational therapist gave me. I found them useful but this site where u can talk to everyone is far better purely coz ur not talking to a plank of wood we all understand one another. I hope ur wife will come to terms with ur illness and offer u her support that we all need as I hope mine will too. Take care, nice chatting to u, stay positive we're all here ?

northernlass

@northernlass

Hi @gemma81 sorry to read you were feeling low but glad that you are feeling a bit more positive now after coming back onto shift ms... I was feeling low over these last few months (Also diagnosed in 2014 and started on Avonex in August so not sure if having the "GLOOMS" was because of having to inject myself or becoming isolated from people due to awful fatigue) but I feel a bit better these days as I feel I gave myself a bit of time out from everything and didn't let myself feel guilty about it... I know with young kids that is almost impossible but maybe grabbing a bit of you time whenever you can even if it's just putting your feet up with a packet of choccy biscuits watching some catch up TV while the kids are at school or something like that :) Best wishes

gemma81

@gemma81

Hi Antonettefick, Yes MS does suck big time! My kids say that the M stands for magical and the S stands for special, my youngest is 4 and they tell me all the time I'm their magical an special mummy, for them to say that is enough to put a smile on my face. Kids see things in life so different to us adults don't they!!! As for being super girl... I am trying to take time out and stop rushing around... Hope all is well with you ?

gemma81

@gemma81

Hi northernlass, Definitely a better day today... I just need to concentrate on the positive in life and not dwell on the negative. I am mad and special and proud of it.... Lol ? yeah think I definitely need to start going out a bit more!! Lol Best wishes to you too

question1333

@question1333

Hi @gemma81. Sometimes it's good to vent and let a bit of steam off. Just remember, though, that positivity -- and thankfulness for the little things that make you feel lucky -- can often be the best tonic. I, myself, have gone through and overcome the worst of a different illness (Epilepsy and Brain Surgery) and have watched, unable to help my wife's mum as she passed away suffering from ALS. The way I find I can feel good is to help others. My sister in-law is in her late 20s and now suffering from MS. However, she still has her independence and is strong enough to stay positive. Meds are always hit-n miss. After all, we are all different. My absolute best advice would be to try and take back control of the situation by researching the progress of medical trials and the latest generation medication online with a particular goal of seeking to find a drug regime which many others agree is successful at addressing the symptoms (and/or side-effects) you are feeling. A key to lower stress is more effective management of the condition via effective medication and a willingness to treat some things in a more laid back manner, ensuring only the most important issues are 'on your radar'. Try to delegate lower importance tasks to your support network of loved ones and specialists. Best wishes, :-)