5 years ago
Feeling very alone…

Haven’t posted for a little while but I feel I need to get things off my chest. I’ve started my Avonex now and due my third dose tomorrow. However I see my consultant on Thursday as I am being switched to tysabri due to having highly active RRMS. I’m suffering yet another relapse, my left side from under my arm is totally numb and have an awful stabbing pain under my armpit and in my shoulder blade. I saw my nurse last week and I just got the usual “I’ll make a note of your symptoms”. I’m in pain, and it’s getting worse. I’m still off work (nearly 4 months now) with no end in sight. I go down to half pay in August and I’m scared…MS has thrown my already crazy life into a downright dizzying hell. I don’t feel like I know how to cope. Do I ignore it? Embrace it? Kick it’s sorry arse?!! I just want to scream and have a full blown tantrum. I hate what this has done to my body and my life. Please excuse the rant but I feel safe doing it here and that you’ll understand.x

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Oh yes Ophelia we do understand, I have the same numbness on my entire left side and drag my left leg like a zombie, but I can never give up and never give in. I doeskick our back sides but fight on sister your in the right place here. I am on social security disability so with my pension that I took early I am doing ok, do they have anything like that where you are?

I’m not eligible for any support as far as I’m aware. I can apply to a hardship fund through my professional union should I need it but I’m hoping they’ll consider letting me back to work before that is an issue. I’m a midwife and I’ve worked ever since I left school. I need to work for my mental state which,as you can tell is pretty much in tatters right now. To say I work for the NHS they seem to have a pretty poor understanding of the condition!

I hope you get what you need as I am not familiar with the way things work in the UK.


Anonymous

You have the right to rant and it sounds like you have reason to. I don’t think there a person on this site who doesn’t understand how you feel or who hasn’t been through a similar situation themselves.
Take care of yourself is the best advice. Its a way to ignore, embrace, and kick this problem’s ass. Its hard, difficult, and disheartening but its worth it.

I’m still very early in the process of all of this…and even I am starting to find it quite difficult to keep up working. And sadly getting support is extremely hard these days…and it seems they want to just make it even harder.
Keep fighting! Go to your doctors and throw a fit. They are supposed to be the ones helping you. See if there are any symptom management meds/therapies that they can prescribe to help you while your dealing with this current relapse. Make sure you’re fighting for yourself.

With the pain can you get to your doctor and demand some sort of pain relief? You shouldn’t have to suffer in pain like that if there is something that can possibly help. If you can get that sorted and you have a positive appointment with your consultant that will help I’m sure… In the mean time if the pain can be controlled that will be a start. If they see how much your dealing with hopefully the whole process with the new medication could happen sooner rather than later xxx

Also I’m sure that when you go onto half pay (which I am on @ the moment) I think if you contact citizens advice you can claim for an allowance – not sure what sort of allowance it is or how much but I’m sure you can. I attempted it once but hung up cause I was on hold for an hour! But I’m sure of it though.

times like this I wish I had more to offer than silent thoughts of support


Anonymous

Have to “ditto” @lightningduck here… It’s difficult not being able to provide more than just letting you know that you are actually “not alone” although I totally get the reality of how you are feeling. One of the things that gets me on my toes (if in fact I could still get on my toes without shaking, having tremors or falling down) is the injustice of not just one health care system but all of them on mass and the difficulties and frustration that they in fact add to what those of us with MS are already experiencing. Isn’t it bad enough that we have this disease? but to have those that are meant to assist, aid, support, blah blah blah are actually causing further stumbling blocks and other obstacles hindering any physical or emotional well being that they themselves are meant to provide. It’s just plain WRONG and it irks me to no end. I really feel for your situation @ophelia and hope that an answer, solution, some sort of support and assistance is made available to you very very soon. Hang in there…. I know that those of us on this site are definitely there for you be that via silent thoughts of support or shared ranting… just know we DO care 🙂

@ophelia i am so sad to hear you’re still having a relapse…. i am very similar although i have declined all meds…. please check with the CAB office with regards to monies… i know this is all you need at a time like this, but somehow you’re gonna have to find the strength to do it… its madness i know as you’re poorly…. love and hugs to you xxxxx


Anonymous

We are always here for you. You are not alone. Go outside and have a good scream. I does help.

I know only too well the feeling of being totally alone. It fills me with despair at times. I’m finding it really painful to walk at the moment so I’m not getting out much, which increases the feeling of isolation. It does help that you peeps are out there, as an invisible but potent crutch to lean on. xxx

The other posts have said it all so well. Please don’t feel alone. There are people there for you, here for you in fact, who know exactly how you feel.

Don’t feel guilty for allowing yourself time to be human. x x x

Hang in there!!! I completely understand where you are. I have totally been there myself. It is really very difficult, scary, and seems so unfair. This disease seems to come in and want to hijack everything that matters. Don’t give up. I can attest that sometimes in the darkest places where you dont know how you are going to make it and things are so uncertain, and there seems no hope, a helping hand or solution randomly shows up, something comes in to inspire and give hope etc. Those of us struggling with this disease seem to be forced to build a spirit that is stronger than our circumstances in order to make it through every day. I am sensitive to the fact that not everyone believes in God (if that is you I dont mean to offend) but as for me prayer helps me and I try to keep my eye focused on the fact that I believe all things are possible, healing is possible, and the knowlege that there is something greater than me and my circumstances that has my back. Although, it can be hard to stay in that place too some days. Sometimes all you can do is step out in faith and do what you need to do to take care of you and trust that somehow the rest will be taken care of. You are definitely not alone!

Ophelia, I feel for you. I’m in a pretty similar position myself. My coping resources are God, this site and my family. In that order too. If we can just get the money thing figured out it would be easier to smile thru this disease. Keep your head up and keep reaching out to your MS friends for support. You should definitely try what se7enity suggested.
*Hugs*

Thank you everyone. You guys are such an amazing support. Thank you for your kind words.xx

I’m feeling even more alone today. I’ve gone into relapse and have no-one near me to help. Still, it will give me the focus to get on with things to the best of my abilities. I’m a tad nervous though as I’ve been near to falling a few times already. I’ve got to make sure I have my phone on me at all times.

@pottypete I’m rooting for you buddy, stay upright if you can 🙂

Mark

Thinking of you pottypete. Sending cyber hugs!!!xxx

Thanks peeps. I’m having to rest a lot, which means I’m not stumbling around, haha.

Tip for Pete: Hang out on the floor, that way there is no where to fall to. 😉
Sorry you’re having such a lousy time. Sending hugs your way.

I have to say, with the friends I’ve made here and my friends on a certain comedy site I frequent, I am resplendent with caring people. You keep my smiles coming through any tears. I’m hopeful that this episode is not a full blown relapse. Just one of the many blips we folk have. Love, hope and thanks to all of you.
My mood is improving, ie I’m not crying all the time. Also the drugs are having a beneficial effect. Though I do HATE drugs, they are a necessary evil at times.

You’re never alone here but have your tantrum kick and scream but never give up on yourself!

@ophelia, and @pottypete, I know exactly what you are going through, there are days when I feel like screaming or have tears in my eyes, feeling like I dont have the words to express what is happening. I have found staying close to friends and family is my light in the darkness. I wish you all the best and if I anyone wants to talk, I am here in support.

So the consultant wouldn’t give me ANY meds for pain or fatigue….he said to wait to start tysabri and see how I go….should I just accept this or keep pushing?!!

Unless they have a concern about the fatigue and pain meds interfering with the Tysabri, you should push the issue. I will be starting Copaxone soon yet my doc was ok with prescribing Amantadine for fatigue and something for nerve pain (can’t remember the name).

My mum is a nurse, (CCU but her position isn’t relevant for here!) she has a good idea on how the ‘system’ works. You need to make a nuisance of yourself. Ring, drop down for a visit, demand, complain. You need to be calling/hassling them every day. She works with other members of the NHS and knows what gets them going 😉 (I think threatening to complain to the relevant governing body works, as a last resort).

But this isn’t just for the NHS. Applies to life in general, you don’t get things without being pushy sometimes.

@jonnydrama I’m a midwife so know roughly how things work from the other side (finding being on the receiving end of care very hard to deal with!!) I’ll keep pushing and making a nuisance of myself until they give in!!

How soon do you think it is until they start the new meds for you?


Anonymous

I’ve been feeling very much alone this last week. I have my family, my partner, this site, and even doctors now (on some level)….but I am feeling well and truly alone. Trying to pull myself out of it but finding the climb difficult.

Ophelia, I too am so angry at what MS is doing to my body, it just does not suit me this bloody illness! I find now it is really restricting me and am now having to change my life and worry about the future all the time, we have to keep ourselves busy!
for the time being try to relax and not stress that you are not at work, surely being a midwife you are running around on your feet all the time, on the money side of things, I think you mentioned you were having your mortgage paid off next week, surely this has taken alot off money worries away? are you married/partner you live with, do you drive? keep strong x

@Chels I completely understand that feeling, I’m so sorry. I often have low points too. Lots of anger, fear of the future and hopelessness.
Eventually, something changes and I have the strength to climb back out of my pit of despair. For me, trusting in God has been a huge part of this.
You will be on my mind and in my prayers. Be strong.

@Chels I hope you’re starting to feel better, I’m feeling a slight lift in mood today (think its the sunshine!) we’ll get there, sounds like you have a good support network around you. Keep smiling xx

@loulou yes the critical illness claim will take a massive load off my mind however there’s still the other bills and things to pay!! I’m starting to feel a little less stressed about things now knowing my claim has been accepted. Taking everything a day at a time but thankfully I’m moving in a positive direction.xx


Anonymous

For those that are struggling at the moment with whatever concerns or problems that their illness is causing please know that along with @greendragonfly77 that you are in my prayers. I try to stay current with the posts and have to thank all who have “been there” for me over the time I have joined this site…. I can’t say I always have any words of inspiration or even anything that remotely is of help but please know that the care is reciprocal 🙂


Anonymous

As a suggestion for keeping your stress levels low. Sit down take a deep breathe and write down everything you can control and the things you cannot. Try not to worry about things you have no control over.

Ophelia, I have gone thru the interferons, copaxone, tysabri, gilenya, and now campath. I felt like I could fly on tysabri, NO KIDDING! My lesions didn’t just stop growing but actually started to heal. I took karate for over a year with my husband and sons while on it. I lost 30 pounds and was on top of the world! The only reason I had to stop was that I built up the JC antibodies and was at risk for the PML virus, which can be life threatening. If Campath is unsuccessful, I WILL be back on tysabri! I understand the darkness you are in. I feel the hopelessness and rage, as well. When I feel good, I run like a stallion. But the next day comes, everyone expects a stallion and what comes out of the gates but a 90 year old jack-ass! I hate being unreliable. I hate the roller coaster ride. My prayer for you is that tysabri shoots ya to the moon! I hear it over and over again and lived it for 37 infusions here in the U.S. 67-73% decrease in lesions and improvement in long term disability outcome compared to interferons 27-33%. Go for it! Look forward to it! Best of luck! I look forward to hearing how it goes! tngirl

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