Struggling

merri

I don't know what to do or where to go any more. I'm off sick today as everything has come to a head and my body has just told me no, it can't do it anymore. Mr Merri is currently working away, meaning that I've lost my live in carer and making life so much more difficult. At the moment he's only able to come back for one day every 2 weeks. None of my family or friends are really bothered tbh, as most of the time I try to make out that things are fine, although they're really not. I'm struggling with this physically and mentally.

I'm trying to hold down a full time job, this year I've had an extra 2 hours added to my working week, and I'm not coping. My absence record is appalling, due to my AR flaring up at different times and whenever I catch even a mild cold.

In addition to this, my joints are worsening. Up until 6 months it was *just* my neck, shoulders, back, hips, knees and hands. Over the past 2 months I'm getting worse, it's now affecting all of my joints, including my jaw, wrists, ankles and toes. I'm 30 years old and I can't believe I'm like this. I'm on so many meds that I can't even count any more and even with them my condition isn't stable. I've got an appointment with the consultant soon but tbh even though my ESR is usually mid 50s, he doesn't want to do anything more. I just can't cope any more.

Numptydumpty

I'm so sorry you are feeling this bad. Maybe it's time you told your family and friends just how bad things are.
Do you also make out things are fine to your consultant?
I suppose missing your husband isn't helping matters either.
Please talk to your family and friends, I'm sure they would help if they knew how much you are struggling.
Wishing you well,
Numpty

LignumVitae

Right Merri, first things first, here is a big giant but gentle hug! Life is kicking you when arthritis has got you down.

I think you ought to call your rheumy nurse/ consultant's secretary if you dont have a nurse and plead your case that things aint good and you can't live like this. Sometimes, they think we are doing better than we are and they get a bit blase about it all unless you give them the truth adn the state of things with two barrels, now is that time for you.

Holding down a full time job, no care at thome because Mr M is away, extra hours and then you pressure yourself with worrying about your sickness record (I kind of get that impression). From the girl who did that for far too long, stop! Life is too short to try and keep up with all that. There are loads of things you can do, talk to work about the working pattern (extra work puts more pressure on which makes your body struggle more which makes you iller) and see if there is anything to be done. Working from home might help if possible, taking longer lunch breaks/ starting/ finishing earlier or later might all help but depend on your work. I know I dropped half a day on a friday so now only work nearly full time and wow did that make a difference. It gave me time to recharge and have fun before going back to work whereas before that it had been full speed for 5 days, crash for two in a glorious cycle. Really consider what you can change there and give it a go.

As for your family, are you sure you aren't bothered or are you damn good at hiding how bad things are? I was like that for ages and then I ended up asking for help and it came flooding in, so much so it made me cry my damned eyes out on a regular basis for quite a while.

You are doing amazingly to be coping as well as you can, it takes much guts to keep going at times like these but maybe now its time to give yourself a break, ask for help from the three places you can get it - your consultant, your work and your family. I am sure at least one of them will reach out to you and I have a sneaky feeling all three will.

Until then, we are here, we can't do loads more but listen but we can do that and do that well so shout, we're waiting to be here for you.
Good luck and loads of love, LV xx

PS I damned love your name, so much so I think Mr LV might have it chalked on the list of potential baby names when he comes in later!

julie47

Hi Merri

I am sorry that you are having such a terrible time at the moment and agree with Numpty that you should tell your family and close friends how you are feeling. I should also ask them for their help while your hubby is away, even if it is only to ask if you could go for tea. (It would stop you having to do it when you come home from work)

I hope that you start to feel better soon
Love Juliepf x

stickywicket

Well, Merri, LV has said it all. I agree with every word of it and the only thing I would add is that, when things get really tough we all (OK, definitely me and a few others) find it harder and harder to take decisions that will actually improve our lot. If you're feeling overwhelmed and indecisive it's probably due to the pain and general awfulness of the situation and is a sign, in itself, that something must change. Please take the bull(s) by the horns and ask for help from all those who can give it. And please also let us know how you get on.

merri

I can't tell you how very grateful I am for the replies, thank you. LG your post has definitely hit a nerve (in a good way) and I think I'm at the position where something has to give, but I don't know what. I've been looking through my finances tonight, trying this way and that to work out how I could afford to go part time and the answer is I can't, which frustrates me. I'm the main wage earner until Mr M finishes university, and I can't pare things back more than they are already pared back. Doing just one less hour than I do already would result in a 10% pay cut.

LG - your description is spot on, work for 5 days, sleep for 2 days, go to bed between 6-7 at all other times. I know I'm neglecting myself in so many different ways, I have no quality of life anymore and I can't see a way out. I would discuss it with work but in all honesty due to conversations I have had the past week with them, they already want to put more pressure on to me, not take it away. I've been back now for 16 months ish and they don't understand how I'm not "fixed" yet.

I know I sound defeatist, I honestly don't mean to be. I've spoken to my family but two of them have arthritis (psorias and OA) and they're not at the acknowledge someone else is in pain and empathise. They just tell me how they have it worse, even though my 84 year old grandfather walks twice as fast as I do! I've thought about reaching out to my friends but one has discovered her OH has had an affair, the other knows her OH is having an affair and one is so busy at work that they can't handle me talking to them about this, which is completely understandable.

An appt with the consultant is already on the cards for just over 2 weeks, they can't fit me in any earlier than that but I will definitely be telling him the truth.

I'm sorry, I sound totally ungrateful and I really am not. I'm very grateful that you have taken the time to reply, it means a lot. My brain is whirring at the moment, trying to find ways out of this situation thanks to your support, whereas earlier I just couldn't stop crying.

I'm still feeling poorly at the moment, and am trying to decide whether to go into work tomorrow or not. I hate feeling like the weakest link due to this bluddy condition.

Soretoe2

Hello Merri, I just wanted to add my sympathy and support.
As everyone else has said you must accept all help you can.
Contact your gp/consultant/Rheumy nurse and explain how you are struggling and on your own for the most part. You mention your consultant says he doesn't want to do anything else. Well this isn't right. They must pursue all options and to be fair it can take a while to find the right treatment/meds that suit you best. You must be really strong and tell him/her that's just not good enough and you need real help as your current regime is just not working for you.
Is there anyone you can take with you to give you a bit of support and make sure you get some kind of help?
Please contact your family and tell them how it is. I expect you, like the rest of us put on the 'I'm ok' smile, when we are just falling apart inside.
I am filled with admiration to hear you have a full time job, even if it's too much for you. Most people with so much to put up with would have given up a long time ago.As LV has said, go and see the boss and ask about changing your hours/type of work you are doing.They must know how hard it is for you.
Sending you lots and lots of good wishes for positive happenings coming your way soon. Take very good care of yourself, Joy

stickywicket

It is a tough situation, merri. My suggestion would be that you do take tomorrow off - give yourself a day to try to sort out some kind of plan. Can you see your GP for a change of pain relief? Is there just one friend you feel you could ring? (The fact that they have their own problems doesn't necessarily mean they don't have time for yours. I sometimes ring friends and we each talk about our own problems and sympathise with the other's. Friendship is a two-way thing) Or, maybe it would be better for you to ring our own AC Helpline? They, at least, will have time, an understanding of your problems and a sympathetic ear.

salamander

Hi Merri
I'm sorry to hear you are struggling so much at the moment. Have you been to see your gp to ask for support? Are there any aids or adaptations you could make to your place to help things a bit? Or to your workplace? (you are entitled to ask I believe) Occupational therapist can help with the first.

If you worked part-time, would you be eligible for working tax credit? Do you currently get DLA? If not, perhaps you could go to CAB and see if they can help you work out if there is a way you can make things easier financially for yourself. They do give that kind of help and advice, they did it for me some years ago when I was in a very bad place. Just tell it like it is.

Apologies for posing all the above questions - just throwing stuff out there to see if any of it would be of any use to you. Please forgive if I am going over old ground.
xx

frogmella

Hi Merri,

I am sorry that you are having such a bad time at the moment. I have little to add but just wanted to lend my support really.

I know you think your friends have too much on their plates to want to listen, but maybe that is not true. I have one really good friend and over the past couple of years we have been through the mill together. She suffered with anxiety when pregnant (still does a bit) and I had major issues with my spine. We got through it together. Both cried, both talked. I know for a fact that she kept me sane. You might be surprised to find that your true friends are only too willing to help you just like you help them, as said above, friendship goes two ways.

As far as the family members that also have arthitis, well, I don't know what to suggest really. I have a friend with "arthritis" in her knee and it is always worse for her. I just don't talk to her about this stuff any more. Maybe turning to friends rather than family will be less stressful?

I know that it is difficult to get the health professionals to believe how bad things are for us. We tend to be quite stoic and so others can't judge our pain. You would think the docs would be able to read between the lines, but apparently not.

I am sorry about your work situation too. I can't imagine how you are managing to work full time. You must be thoroughly miserable.

I am sure that the pain/tired/miserable combo is making it really difficult to think things through. Sometimes it feels like we are in a cloud and there is no clear way out. I hope that your GP or somebody can lend you a hand.

I hope you have taken the day off today to recover a bit. (())

diamond

Sorry to hear things are difficult for you Merri can't add anything else it has all been said.Sending hugs (((( )))

hileena111

Hi Merri
All I can say is that you should let your family know what its lioke on a really bad day....not a good day....also your GP/Consultant or whoever else needs to know....be sure and tell them about your worrse day

Love
and (((((()))))) Hileena

villier

Hi Merri can't really add any more sorry you are feeling so bad hope things get a bit better for you soon ........Marie xx

merri

Once again a massive thank you. Something clicked last night and I realised that I can't carry on like this for much longer. My OH is in denial tbh as he says things will get better once I've gotten over this bug/cold/virus but being on Methatrexate means that I'm always coming down with one bug or another and my condition in general is getting worse not better.

I have applied for DLA and I've made the decision that if DLA is awarded then I will discuss part time working with work and see what they say. If it isn't, then it's time to reassess once again. I'm hoping that we will be able to move house within the next month to a place closer to work, which might solve the work issue by itself.

I completely forgot to thank you all invidually yesterday, sorry.

I don't know if I will be back at work tomorrow. I feel like I really should be there and feel fine as long as I stay in bed with the electric blanket on. As soon as I get up and start moving around my joints protest and my temperature rises again. I can't bear the thought of calling in sick and telling them why again though, I'm sure they think of me as a liability and who can blame them.

stickywicket

Please don't worry about not thanking everyone, merri. These things do tend to slip our minds when there is so much other stuff screaming for attention. You sound more decisive this evening and that has to be a good thing. I'm just a little concerned, though, that your plans seems to be long term (DLA, house moving). Have you decided yet how to tackle the more immediate stuff?

LignumVitae

Merri, I'm so pleased that you have taken this deep breath! Well done, it takes much courage to reassess like that. I've been thinking of you and hoping you were curled up taking a break and caring for you, it can only help and if you need to do that then that is what you should do. The alternative is going back too soon and getting run down again and that's not good for anything. Nobody will think you a liability, they really won't, I thought that about myself but once I chatted with the boss I realised the opposite was the case, people will applaud you for how hard you are trying. OH/ family/ friend, the denial thing is common, I think it's protecting themselves from dealing with something they are scared of because the possibly couldn't imagine handling it as well as you do, it's damned scary when there's no answer or practical help you can give. Back under that blanket, keep warm, keep rested and let time and sleep work some magic! Sending you a big gentle hug...your name is on the list of potential baby names by the way!
Lots of love LV xx

PS a house move as well...you know how to apply that pressure on yourself don't you?! I applaud your tenacity and will to keep going, I really do!

hileena111

Hi Merri
That last post sounds so much more positive......I'm so pleased.
As for thanking us {especially individually} ....dont worry about that

Love
Hileena

frogmella

Hi Merri,

Don't need thanks, that is what we are here for. If you need to take more time to get "properly" better then do it. It sounds like you need a rest to me. It is good that you have taken some time to think of solutions, sometimes just the thought that there may be an "out" is all you need.

Big hugs ((()))

merri

LignumVitae wrote:

Merri, I'm so pleased that you have taken this deep breath! Well done, it takes much courage to reassess like that. I've been thinking of you and hoping you were curled up taking a break and caring for you, it can only help and if you need to do that then that is what you should do. The alternative is going back too soon and getting run down again and that's not good for anything. Nobody will think you a liability, they really won't, I thought that about myself but once I chatted with the boss I realised the opposite was the case, people will applaud you for how hard you are trying. OH/ family/ friend, the denial thing is common, I think it's protecting themselves from dealing with something they are scared of because the possibly couldn't imagine handling it as well as you do, it's damned scary when there's no answer or practical help you can give. Back under that blanket, keep warm, keep rested and let time and sleep work some magic! Sending you a big gentle hug...your name is on the list of potential baby names by the way!
Lots of love LV xx

PS a house move as well...you know how to apply that pressure on yourself don't you?! I applaud your tenacity and will to keep going, I really do!

unfortunately our landlord changed their plans for the house, so we have to move. I am a stubborn madam once I dig my heels in though

barbara12

Hi Merri
LV has said it all, but I just want to say how glad I am that you are talking to us, it really does help to get things off your chest..and has you know we do understand some of what you are going though.
Sending you loads of very gentle hugs (((((()))) and I do hope you get some relief and help very soon xx

villier

Merri there is no need to thank individually........that's a good idea applying for DLA, if you can get the top mobility allowance(£298.40 every 4 weeks) it would may be enough to allow you to go part time at work, also if you drive you would get your road tax paid. I don't know if you have applied before, if you haven't when filling out the forms put as much information that you can even if you think something is trivial write it down, make sure the emphasis is on what you go through on a very bad day, even if you have to carry on on other paper it doesn't matter, hope you are feeling a bit better you know there is always someone here to listen........tc.......Marie xx

bubbadog

Hi Merri, 1st can I give you a big (((HUG))) for trying to live by yourself without any help, that took some strength! But your not giving up asking for help, your just needing some help to live your life. Trying to keep a job down while living with Arthritis is very hard, Arthritis drains you completely! You are so strong to do that. You just need to recharge your battery. Your gonna have a mountain of stress looking for a new home, working part time may be a good idea.
Sitting your friends & family down and saying 'look I have 'this' wrong with me I'm on medication but it runs me down and I could really do with your support'. You've said it then and it's up to them how they will act.
I hope everything settles soon and you get all the love and support you need from friends and family, and support from your work place. keep us informed. Take Care.